Patient Angst: When You Just Have To Say ‘No’ To The Doctor

Dr. Annie Brewster, who has MS, struggled over the decision to reject her own doctor’s advice.

By Dr. Annie Brewster
Guest Contributor

Like most doctors, I am an overachiever and I have always been a “good” student. Throughout my education, I perfected the art of making my teachers happy. I made it through prep school, college at Stanford University and Harvard Medical School with high honors. I am used to doing what’s expected of me, and doing it well. I thrive on the rewards associated with such behavior.

But now, as a patient with Multiple Sclerosis, I find myself in an unfamiliar role. I am deliberately choosing to ignore my doctors advice. He wants me to be on medication, but I quit a month ago. While I trust that I am doing the right thing, I can’t help but feel that I am a “bad” patient, a disappointment. Undoubtedly, part of this is due to my neurotic, overachiever tendencies. My doctor has not reprimanded me. He has simply made his opinion clear, as he should. Still, I sense a subtle disapproval and I feel misunderstood and boxed in, like he doesn’t really see the whole me.

Because I sit on both sides — as doctor and patient — I am especially interested in exploring these feelings. Why do I feel like a disappointment? Is there such a thing as a “bad” patient? When should we listen to our doctors, and when should we not? As patients, are we free to disagree?

As a physician, I would like to say that doctors do not classify patients as “good” or “bad”, but I can’t. Consciously and unconsciously, and of course in varying degrees, we do. To be honest, my job is easiest when a patient accepts the diagnosis I provide, understands my explanation of the disease process and the pros and cons of various treatment options and ultimately follows my recommendations. It is particularly satisfying when patients do what I say, get better and then express gratitude. A neat and tidy package, wrapped up and sealed. A sense of mastery.

Patients who don’t follow my recommendations, on the other hand, can be frustrating. I am trying to help, but I can’t, or at least I think I can’t. In medicine, we label such patients “non-compliant,” a term fraught with negativity. For a while, there was a movement to use “non-adherent” instead of “non-compliant” as a less paternalistic and derogatory term. Except in scholarly writing, it seems this term didn’t stick. I still hear “non-compliant” all the time from my physician colleagues, and in truth, I am not sure “non-adherent” would have been much better. Doctors judge.

Moreover, doctors like clarity. We prefer to do something instead of nothing, and this often means prescribing medications. For the most part, patients encourage this behavior. No one likes to leave the doctor’s office empty handed. The misuse of antibiotics to treat respiratory viruses illustrates this point, but that is another story. Patients want answers and clear cut solutions and doctors want to provide them. To admit how much we don’t know — how much is out of our control — is frightening for all involved.

Living with Multiple Sclerosis, I have been forced to confront this ambiguity. So much about this disease is unknown and unpredictable, and the variability between patients is extreme. Today, I am totally fine. I have the Relapsing and Remitting form of the disease. My relapses are rare and minimal in terms of symptoms. I have no trouble keeping up with my four kids. I hike, run, play lacrosse and ice hockey and maintain a busy personal and professional life. I have been very lucky. But it is certainly possible that I won’t stay this way, that I will move into the Secondary Progressive phase of illness and face immobility, incontinence, visual problems, or even cognitive impairment. Certainly, my 11 years of relatively inactive disease bode well, but ultimately there is no way to predict what is to come. There is no cure, only disease management. Nothing about this disease is clear cut.

In my experience, current medical thinking does not reflect the diversity of this illness. Since my diagnosis in 2001, I have had three different neurologists, all highly regarded physicians in prestigious Boston hospitals, and all fairly uniform in their approach. The clear bias among my doctors has been to use disease modifying medications early and aggressively, despite the fact that my symptoms have been very mild. None of them have talked to me about other ways to manage my disease — diet, exercise, stress reduction, acupuncture, massage. None of them has ever said that taking no medication is an option, that I might be totally fine without pharmaceuticals; that none of us really know or that my feelings are important. The message has been clear: Taking medications is the right thing to do, the only responsible path.

I am not opposed to taking medications. When I have a cold, I am quick to pop the highest possible dose of whatever over-the-counter remedy I can get my hands on. If it makes me feel better, bring it on! With MS drugs, though, I am less convinced. These are powerful medications which target the immune system so as to disrupt the autoimmune attack of the disease. The potential benefits are significant, but so are the potential side effects. And the potential benefits are hard to measure because of the unpredictability of this disease, especially in my case, because right now I feel great.

I admit that my approach to my illness has been somewhat irrational. Despite my science background, I have an aversion to reading the research papers on the topic. While I am open to hearing a summary of the drug efficacy data from my physician, I have no desire to dissect the minutiae of each study. Statistics aren’t helpful to me. Instead, I have been guided by a deeper, emotional, intuitive force that is hard for my doctors, and many other people, to understand.

In 2001, when I first developed numbness and tingling in my legs and was found to have one demyelinating plaque on my brain MRI, my neurologist was quick to diagnose me with “probable MS” and to recommend that I start disease modifying therapy immediately.

What I wanted from my doctor — but didn’t get — is for him to see that I was a medical resident with a two-year-old child and going through a divorce. That I yearned for more children. That I wasn’t ready to accept a chronic illness into my life. I wanted him to consider the context of my life, but he didn’t. I left his office (practically ran) and didn’t return for five years. My symptoms resolved and I put the possibility of MS out of my mind. Life went on. I met my current husband. I had two more children and gained a step-daughter. I finished residency. Denial, I suppose, but this is where I needed to be.

Five years later, in 2006, I returned to the doctor after a recurrence of symptoms and finally accepted that I have Multiple Sclerosis. I have been on three different disease modifying therapies since in an effort to follow my doctor’s recommendations, despite my continued ambivalence. I have stopped all of them, either because of side effects or because they were no longer “working” (based on changes on my MRI, not on my symptoms, which have been essentially stable over time). My last attempt was in June, with a medication I have always been reluctant to try because it can cause “flu-like” symptoms, and depression. I did the once weekly injections for three weeks, and side effects were as advertised: headaches, body aches, and exhaustion. I was spending two days out of each week feeling miserable, while before I had felt well.

The night after my third dose, I lay in bed with a heating pad on my low back and a rioting headache, unable to sleep. I dragged myself through the next day, crying easily and snapping at my kids when they didn’t deserve it, just wanting the time to pass so I could get to my bed again and hopefully sleep. I found myself wondering if this was really worth it, if my doctor understood what this was costing me, but I remembered him telling me that the side effects should ease up over time, hopefully, and I re-committed myself to following his advice. A few days later, when I felt well again, I changed my mind. I was sitting on a cushion of moss on a river bank in New Hampshire, watching my five and seven year old skip rocks into the water below, listening to their laughter against the back drop of the flowing water, feeling the warm sun on my back. It was a perfect early July day, and one of those moments when time seems to stand still, and everything comes into sharp focus. For uncertain benefit, I am unwilling to give away time. I decided to quit and join the ranks of the “non-compliant”.

A week after I took my last dose, an article in The New York Times reviewed the results of a newly published study on the efficacy of this very drug. While the medication was shown to decrease the rate of relapses, it had “little or no effect on a patient’s progression to disability.” As someone with only minimal symptoms, I read this as a validation of my decision to quit. If I am feeling well, why lose two days out of each week if the medication won’t even help ward off disability? I felt triumphant, with both science and intuition on my side. Still, it took me weeks to tell my neurologist that I was no longer taking the medication.

I understand that for some people with MS the potential positives of these medications outweigh the potential negatives. I understand that at some point in future this may be true for me. This is a constantly shifting calculus, and tomorrow will be different from today. But today, I want to be medication free.

My doctor tells me that there is about a 50% chance that I will move into the Secondary Progressive phase of illness and develop significant disability in future. In this, I hear good news. “Phew,” I think. “I will be fine.” A splash of denial, perhaps, or maybe just optimism. A gut feeling that I want to honor, for now.

Being on the patient side has changed me as a doctor. Now, I see more clearly that no medical decision is simple. While my job is to make recommendations to patients based on my medical knowledge, there is no one answer. Ultimately, what is “right” is based on a multitude of factors. Living with illness is a dynamic process, and we need to make room for different, and perhaps constantly shifting, approaches. “You are in charge”, I tell my patients.

(Dr. Annie Brewster is a Boston internist and frequent contributor to CommonHealth. You can read and listen to more of her work here and here, as part of our Listening To Patients series.)

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  • FedUpMD

    I commend Dr Brewster for being a highly informed patient who made a decision that makes sense to her, and decided to be ‘non-adherent’. She takes responsibility for her choices.
    This is VERY different than the patients who are given thorough, detailed explanation with follow-up visits for clarification and any questions, as I always do (and I always try to meet their level of understanding or their level of wanting to be informed) and still decide not to follow any medical advice. Years later when they become acutely ill, they want ‘everything done’. Their illness may at that point have progressed to the stage that disease progression cannot be delayed, and they only have the choice for some symptom management.
    Another issue I’ve had with patients is that lifestyle choices they make contribute to a large percentage of disease. Smoking, consistent excessive alcohol and drug use, diets based on ‘I’ll eat what I want when I want and how much I want’, little or no exercise-though the human body needs to be in motion to maintain good health.
    NO ONE speaks of PATIENT RESPONSIBILITY. WHY is that???
    We as a society now take end-points of these lifestyle choices (cardiovascular disease/congestive heart failure/morbid obesity, diabetes, renal failure and dialysis, emphysema–(the list goes on) and make them DISEASES and DISABILITIES.
    Patients often don’t want prevention. Physicians don’t want to be paternalistic or parental. Frankly we don’t have time for ‘the talks’ but feel honor bound to point out cause-and-effect. Even when we only have 15 to 20 minutes with you.
    Patients are the ones who often act like sulky petulant teenagers and do what they want. They get very ill from THEIR choices and decades later, in the end want everyone else to ‘make it go away’.
    Grow up. Take responsibility for your own health. Work and pay your taxes (so we don’t have to work and pay for you to give you free care). Then maybe the rest of us wouldn’t have to take care of you while you are ‘disabled’, stay home, and watch TV. Then maybe you will have self-respect and get respect.
    The patients I’m speaking of are generally those in their 40s, 50s and 60s. The older generation generally does take responsibility, but they were raised in a very different time when they did actually ‘grow up’.

  • Ray

    I relate to this discussion with great interest. Perhaps I have been
    lucky, but my relations with my GPs have been fairly collegial. I ask,
    we discuss, sometimes the doctor goes to his library or online and reads
    the latest on my issues. For some time now I have been a “Senior”, and
    my favorite M.D. is a geriatrist, with a fellow in his practice who is a
    DO. I’ve never met a DO I didn’t like (-8 Seriously, my experience with
    DOs is that they have a broader, more nuanced point of view about
    “practical” medical practice. On a couple of occasions the treatment
    solutions they offered were more effective than an MDs was.

    My experience with specialists is not quite so idyllic. Being an old
    geezer, there is much ado about my plumbing. Were I not more
    circumspect, like Dr. Brewster, I would have been on some strong
    medications with significant side effects, and/or had problematic
    surgery almost 20 years ago, whereas my condition is essentially the
    same today, manageable. The urologist, who I nicknamed the storm
    trooper, because of his manner and his German accent, basically
    disregarded the comments of the intern who examined me, directed him to
    give me two nasty (to me) RXs and if the condition was not fixed in 30
    days he would do surgery. I never went back, didn’t fill the scripts,
    and these many years later, the condition is, if anything, better, and
    manageable. Perhaps not coincidentally, the storm trooper, not long
    after our interaction “moved on” from the prestigious institution where he was practicing. A urologist I saw recently concluded in effect ‘okay, keep doing what you’re doing’.

    When I was younger perhaps it was not so, but for many years now, I approach
    medical doctors as social peers, equally learned, in different spheres,
    able to benefit each other in our own way. I honor what the doctor
    brings to our collaboration, and assume that I will be given appropriate
    respect for my contribution, as well as for being the owner-operator of
    the body under discussion.

  • lefty_lib1

    As a 54-year old woman who was diagnosed with possible/probable in 1990, and later experienced temporary blinding in one eye after the other eye had already been affected by an optic neuritis attack, my confirmed diagnosis followed. Symptoms including leg problems (trouble lifting one and discomfort walking) followed in a relapse-remitting fashion but were very troublesome and frightening. Once Betaseron became available, I was on it! As a photographer the thought of losing either of my eye’s vision was a traumatic thought, as it would be for anyone! This Interferon didn’t do a lot to ward off attacks, including one that caused a hearing impairment… but my docs didn’t listen to me!!! I told them the hearing issue was a relapse, and they thought it had to do with a cold I had at the time. They were so very wrong and more damage occurred than should have. Some time shortly before this I had tested positive for the antibodies of this Interferon (meant it wouldn’t be all that effective anymore, supposedly). So the one doc who didn’t respond to my hearing problem the way I needed him to, also put me on a different Interferon, Avonex (once weekly), which really should not have been done because of the antibodies testing positive w/Betaseron. Because of this disturbing turn-out I found a different neuro who put me on a newer type of disease modifying drug, Copaxone (glatiramer acetate). This one did the trick!!! Relapses reduced to one back in 2000 and none since. Sure, certain things can get worse – mostly cognitive for me – but my latest MRI, a couple of weeks ago, showed no new lesions (as in the past several years), i.e., no progression. If you, Dr. Annie Brewster, choose to go disease-modifying-drug (DMD) free, then I caution you!!! A non-blood relative I know who chose not to try anything at all while she was still relapse-remitting, at the same time I started Betaseron, is now secondary-progressive and in very bad shape. It IS best to start something once you know your diagnosis is firm. Did you try Copaxone yet? It is the only non-interferon right now, and I understand a generic version is being tested. I’ve met others who have chosen to go DMD free and do fine; others don’t. Because this disease is so different from one person to another… I would almost say to be less of a doctor and more of a patient who wants to have the very best quality of life and look at Copaxone if you haven’t. Very few problems… talk to more MS patients as fellow-patients, not as a doctor who has fantastic education, therefore knows better than the rest of us. There are plenty of us very educated MS folks who made very intelligent decisions to use what is there for us. Doesn’t work for everyone, granted. But for hundreds of thousands more… it is working wonderfully. Many of the commenters on this post are not dealing w/MS and their examples are not applicable to this disease. It’s wonderful to see there is even a doctor here who claims DMD therapy was not for him. That’s great for him but, again, everyone is different. A DMD is not ever going to make anyone better once the damage is done. It is there to help prevent more damaging relapses that cause the damage. Think about that….

  • James Leonard Park

    The patient is in charge of his or her life. The doctor is a professional advisor. I have followed doctor’s advice about half of the time. And I am still alive to prove that some of that advice was being too cautious. Here is my story:
    http://www.tc.umn.edu/~parkx032/CY-MED-X.html

  • Me

    What do you do if you are on disability for a certain illness, but are not being treated properly or say at all by a doctor or doctors?

  • disqus_atMG8DwSBo

    “I admit that my approach to my illness has been somewhat irrational ” “Denial, I suppose, but this is where I needed to be.” “I wasn’t ready to accept a chronic illness into my life.” As a physical therapist I can attest to the disregard for safety that those diagnosed with MS have. Many refuse to be safe in their mobility and end up falling due to not heeding advice then wondering why they are more dependent/weaker. I know many a PT in my years that have dreaded working with this population due to the non-compliance no matter how rational or compassionate the treatment. I treat each patient individually and encourage them to try to help themselves but when they don’t listen or accept very helpful advice I can no longer work with them. It would just be unethical to be wasting their time and money.

  • Bella

    I’m a lawyer. So I often am called upon to give my clients advice on a particular situation. I can’t fathom writing in my notes “non-compliant on naming guardians for children. refused to sign life insurance trust.” I always tell my clients that my job is to tell them the legal consequences of various courses of action, and it is their job to decide what to do. Why do doctor’s think we have to do exactly what they say or be noted as “refusing” “non-compliant”? Of course I put in my notes “advised client on xyz, they are still thinking about it.” But that is mostly to cover myself.

  • Rajalakshmi Kandaswamy

    Hi Dr.Annie, thank you for sharing your story. I am a doctor myself and a Healer. I can help you recover through my Intent Healing (TM) method. IF you feel drawn to contact me for healing sessions you can do so through my website http://www.sowjanya.in. Best Wishes ! Regards, Rajalakshmi.K

  • Susie Reynolds

    Do what Montel is doing. Juicing raw foods, exercise, and cannabis oil as well as juicing the plant. Doctors need to know that marijuana is medicinal, it cures cancer, helps with MS, Fibro, and a host of other illnesses. My best friend’s daughter is seizure free, because her parents made and dose their child with cannabis oil. MS can be and is controlled with diet. GET OFF any wheat, and especially sugars, artificial sweeteners and any white food. Flour, potatoes, rice. It works.

  • Becky Bridges Gary

    Doctors should act only in an advisory position. It is the patient’s choice to accept the advise or not. I don’t like either of those terms “Non-compliant” or “non-adherent”. How about “the patient has made an educated CHOICE to use an alternative treatment”. I go to my doctor to seek his advice. Not for him to dictate MY health care.

    • Lawrence

      If only my father had that attitude, he would not be suffering with invasive bladder cancer right now.

  • Philip Kousoubris

    We all applaud your decision, in your ying-yang position as provider and patient, and I’ve been both as well. My wife the physician is a traditional surgeon type who reminds me at home of work related issues, bringing home the point that as physicians we really , really can not relate to patients with disease correctly at all without suffering the same. Enough said.

  • Derrick Gibson

    So, I began my treatment right after being diagnosed almost ten years ago, on an interferon beta medication, Avonex, that once weekly injection, and yes, it is fairly useless. More than that, those weekly injections are painful and for me, a huge psychological hurdle.

    I too, quit taking it.

    The opportunity came up to travel to India and I just found it easier to cease my medication, rather than decipher how to re-route such a drug through customs.

    I felt great in India. I told myself that the largely vegetarian diet and the warm, sunny climate were boons to my health and I did not need medication. I returned the USA and moved to Miami, in an attempt to recreate the conditions I found in India. And I was fine, until I wasn’t.

    Until my legs froze one day, while I was out walking around downtown. Until I found myself lurching back to my apartment like some defective Frankenstein’s monster.

    It was the incident which led me to a new neurologist — it took some interviews — and to Tysabri — which takes buckets of money — and to the hope that I could remain on it until a cure was discovered. That is looking less likely, but I still recommend it as it has worked for me for the past five years.

  • Ron Schwartz

    Sorry, not keeping the neuroligist informed about not taking the prescribed medication is not a good idea.

  • Jean Petree

    I walked around with my abdominal cavity filled with 5 liters of old menstrual blood for two years because the doctor insisted I had ovarian cancer and wanted to operate right away. I was convinced I just had severe endometriosis, so I said no to the radical surgery he wanted to perform. He had no proof – just a somewhat elevated CA-125 and the massive fluid (CA-125 is often elevated in the presence of old blood). He basically said, well, if you aren’t going to accept surgery, you will just eventually have to end up in the ER. I had it drained once – no sign of cancer. It filled up again. I ended up in the ER. Opened it up, and I was filled with endometriosis and old menstrual blood. Big surprise to him, but not to me. If I had just gone on Depo Provera, the whole life-changing experience would never have happened … I said “no”, but it didn’t get me the actual care I needed at the time.

  • FEFaith

    Very insightful article. I envy, as well as sympathize with your positions. Be proud of your strength to overcome those obstacles and believe in your choices. It took 15 years of improper MS/neurologist care before I trusted myself again and left him. Healthcare today includes detriments for pts who often are unaware of, and having a medical background certainly creates additional difficulties.

    Hindsight has me angry over my care, and I did debate and tell him “no” on occasion when I knew better. I’m concerned for his pts who may not be aware of, or understand they have choices. He does not get to know his pts, and he is bias and vague when it suits. There are still some pts who never doubt or question Drs.

  • Montserrat Requena

    Happiness and I am very happy to read your words. I was diagnosed with multiple sclerosis for twenty years now and started to walk using a cane. I have never taken any medication and doctors always made ​​me feel like a strange thing. Thanks for your story.

  • Jesusdied Andlives

    I have a blog outlining how lysolecithin / lysophosphatidylcholine causes lesions and is in our products and foods. I pray you find the cause of your lesions – http://jesusdiedandlives.wordpress.comVery good article.

  • Dan L. White

    As a dr, dr, with a father dr, and three dr, dr, dr, sons, I completely understand Dr. Brewsters position. I contracted Lyme Disease z26 years ago which took five Yeats to be properly diagnosed. This case I was correct in the DX. But all of a sudden looked at as a laggard by those not making the same diagnosis.
    I’m not able to practice and anything different HAS to be provoked npby me because of the difficulty of still trying to understand this disease. I would imagine Dr Brewster has run into this also.
    Being a sick Dr. Is has some pro and con, but one has to be non..compliant !

  • Jennifer Wheeler Russman

    Fantastic article, Annie!

    I’m 20 years with MS and after years following medical protocol and living mostly homebound and bedridden from RRMS then progressive, I reclaimed my health and life by following my intuition and becoming a non-compliant patient! I have since recovered and healed and I live an amazingly full and active life. I even just ran my first 5k a few months ago! (and not my last!) I went back to school in a one-year intensive program and now I am a certified holistic health coach specializing in MS. I’m hosting a radio show:

    http://www.blogtalkradio.com/themslivingroom

    The MS Living Room is on Facebook, too. I would love to connect with you! My email is themsmentor@gmail.com. I look forward to hearing from you ( I hope! )

    Jen Russman

  • Jennifer Wheeler Russman

    Fantastic article, Annie!

    I’m 20 years with MS and after years following medical protocol and living mostly homebound and bedridden from RRMS then progressive, I reclaimed my health and life by following my intuition and becoming a non-compliant patient! I have since recovered and healed and I live an amazingly full and active life. I even just ran my first 5k a few months ago! (and not my last!) I went back to school in a one-year intensive program and now I am a certified holistic health coach specializing in MS. I’m hosting a radio show:

    http://www.blogtalkradio.com/themsliving room

    The MS Living Room is on Facebook, too. I would love to connect with you! My email is themsmentor@gmail.com. I look forward to hearing from you ( I hope! )

    Jen

  • Newman50

    I have MS and I was taking the once a week injection and suffering severe to moderate side effects along with 4 to 5 other medications which at times added up to 25 pills a day. When I medically retired from work there was a prolonged period when I was had no income and couldn’t afford any of the medication, so I stopped all of the medication. What didn’t happen was that I didn’t get any sicker nor did I feel any worse I experienced a small improvement in quality of life in not having to deal with the side effects of the weekly injection. Three years later, I am still miserable with MS but I honestly believe that I was worse of taking the disease modifying medication… that costs $1,800 a month and has an efficacy of about 33%. MS is a disease and if you break that word down into 2 words dis ease, which means a body not at ease, which is what sickness is.

  • http://www.facebook.com/people/Lynnie-Heal/1364791273 Lynnie Heal

    My old GP took 24 years to diagnose MS and never read my notes properly ever either.. After my diagnosis of secondary progressive MS he then put me onto 8 different tablets . I was so drugged up on them all 2 weeks later I thrw them all in the dustbin .All my MRI notes were destroyed too. My list is endless . Knows from what have learnt I do not trust any MS drug at all

  • Adam Suranyi

    I too have MS and I too am non-compliant with my doctor. I took myself off Copaxone after finding LDN (Low Dose Naltrexone). It has changed my life for the better. Not sick once since starting LDN in March of 2008.

  • Rick S

    “”The misuse of antibiotics to treat respiratory viruses”"
    If the author is reading this – you know how many times I ended up in the hospital with pneumonia, due to the quacks refusing to treat my chronic bronchitis ?!

  • Missy

    A Dr pushed anti depressants on me the second time I was in his office. I repetadly refused. He had enough the 4th or 5th visit and told me “I’m a medical professional, I’m trained to look for these things.” That behaior shows an UNprofessional. I didn’t leave because there’s so many who are exactlyike that. I went back several more times and even after caving and giving in and taking those awful pills he still didn’t listen. The drugs didn’tjelp one bit, only made me feel worse. Unfortunately the jerk finished his residency and is now out of state. I really regret not filing a complaint against him. I’m still sick and can’t get an answer from any one. I regret going to the Dr so much and these reasons are why I refused to go for so long. It’svso disturbing how they act and treat people. I really think once you get into med school you graduate no matter how bad you mess up.

  • belinda

    I, m 43 i’ve having very bad headaches which come on sudden, i’m sick sweaty and clammy, very pale it can last up to 2 hrs and it can go as quick as it comes, the doctor knows i have high blood pressure as i’m taking two lots of medications for it. The doctor put me on tramadols which did the trick, after a few months i was asked to see my doctor for a review of my painkillers to see how i was getting on etc, i thought before i do go i must give myself a months broken from the painkillers so the doctor didn’t think i was becoming to independent on them and yes i did suffer but i thought it would do me good and the doctor would of agreed with me. Then when i did go back to my Doctors ( this was a trainee doctor this time) explained what i had done he said right ok we’ll try you on something else, i said ‘why’? he said ‘you did with out for a month so why not’ ? He prescribed me beta blockers what a bad mistake because i ended up passing out, so now i have to go back to him (dreading it) WHY? can’t i have my normal painkillers? can he refused to prescribe me them? where do i stand? what do i do?

  • Blenda Park

    i want to thank God for using dr okakagbe as my source of saviour after 2year of joblessness and my lover left me alone for 2 years,Have just been heart broken until i go in contact with dr okakagbe after i saw a ladies testimony on how she was helped by this same dr donkbaba,So i decided to get in contact with him and when i told him all my problems he laughed and said this is not a problem that everything will be ok in 3days time.Exactly the 3rd day my ex lover called me i was shocked and what surprise me the most was that a company i applied for over 4month called me and said i should resume work as soon as possible.Am so grateful to dr donkbaba if you wish in contacting ACOGBESPELLTEMPLE@GMAIL.COM

  • RSD

    I just dont think you are a fine doctor to bash other doctors..May be its time for you to read about your condition and garner knowledge. Start reading literature rather than bashing.

    • Dan L. White

      I read no bashing. What in the world were you reading? I swear..you sound like you’ve been standing in front of the same classroom too many years!

    • FEFaith

      I can’t ignore this as I usually do. You clearly don’t understand the subject but, to bash it is only shameful ignorance. I hope you can gain some positive reality one day, not feel rudeness is a need.

  • Dr Deb

    Amen and good for you. I am a physician, diagnosed with MS 25 years ago. I rejected traditional injection immune modulating therapies, much to multiple neurologists’ chagrin, and opted for meditation, visualization, exercise, diet modification, and hyperbaric oxygen. I am fine; minimal change in brain MRI over 25 years, and no physical disability. I am very happy that i chose this path; i had too much to do in this lifetime to deal with a chronic illness.

  • maxdaddy

    Dr. Brewster says “[p]atients want answers and clear cut solutions and doctors want to provide them” and that “… doctors like clarity.” From this she steps to “[w]e [doctors] prefer to do something instead of nothing, and this often means prescribing medications.” The reason: “[t]o admit how much we don’t know — how much is out of our control — is frightening for all involved.”

    This sounds all too much like the 21st century version of the doctor’s God-complex. I hear all the time from friends–60+, generally–how little their doctor seems to hear them and how unsatisfying their interactions can be. The single exception is with surgery–notably, not a prolonged interactive process, and where the patient is likely strongly to prefer raw competence to a sympathetic manner.
    From my own experience and from that of being the chief care manager for my elderly mother, doctors are excessively prescriptive about things like weight even though the evidence for its adverse effects (except for morbid obesity) is questionable. They are prone to talk about extended life benefits from taking medication X but rarely tell the patient that the effect may only be months, while side effects start soon after a prescription is started and may last until it is stopped or life stops. They know virtually nothing about the short-term or long-term effects of the batteries of medications they often prescribe for a patient’s varying ailments.
    Doctors like to think about “non-compliance” but the point is, more subtle reading of patients is needed here. Not everyone wants to get his or her doctor’s orders and salute. When there are complex tradeoffs–say, in terms of slightly extended life versus ongoing unpleasant side effects–the doctor should disclose these routinely so the patient can have an intelligent role in the overall process. They should routinely disclose that beyond three medications, not much is know about long-term effects. Indeed, generally, doctors should disclose–because there almost always is one–the tradeoff between ideal efficacy and the range of real outcomes on one hand, and negative factors like side effects or only marginal prolongation of life on the other.
    The reality is that, for all the extraordinary capabilities of modern medicine, there is much that doctors do not know or cannot control. Especially in the face of these realities, it is inappropriate for them to make assumptions about patient preferences without actually probing a bit. Do patients really just want to live as long as possible? Or might they prefer less medical activism and more comfort? This is never properly a doctor’s to decide. He or should should advise about tradeoffs and make recommendations based on expressed patient preference when that can be discerned. Few patients understand the indeterminacy of it all. Each patient must be his own Toto, and draw back the curtain to reveal the flailing wizard. Then, patient and doctor can proceed more collaboratively, bringing the doctor’s expert knowledge into conjunction with the patient’s preferences. That’s what doctors do when they need a doctor, if Dr. Brewster’s piece is to be relied on.

  • PJBinMichigan

    The older I become, the more likely I am to “fire” doctors who don’t respect my role in my own health care! I have no patience for doctors who believe their role is to pontificate from a plane above me and dismiss my questions or concerns as not worthy of discussion. I respect doctors who are not afraid to say “I don’t know” and who communicate clearly and directly with me in addition to knowing their field of medicine. Kindness is an added benefit but my family and friends are my primary hand holders! I might add that I have never had to leave a woman doctor for those reasons.

    • neroden

      Yep. Me too, although I have had to dump female doctors for these reasons on occasion.

      I don’t need bedside manner, but I do need a doctor who will explain her thinking in detail, and is willing to discuss other possibilities until we are agreed on the best option. I think like a scientist — and I have the best vantage point for observing my own body.

  • mayacb

    A well informed, respectful patient who does not agree and follow all of their doctor’s recommendations should not be considered non-compliant. I have osteopenia and declined Fosomax and related medications because of the lack of long term efficacy and side-effects. I promised my doctor that I will re-consider when I am over 70 or actually develop osteoporosis–which ever comes later! Overall, medical professionals are much too quick to rely on medication to the exclusion of all other kinds of treatment. It is the job of patients to educate themselves and decide–with education–what works for them. This does not mean relying on laetrile instead of proven cancer treatments, or drinking and smoking as much as you want–just being reasonable and thoughtful.

    • neroden

      “Overall, medical professionals are much too quick to rely on medication to the exclusion of all other kinds of treatment.”

      They’re also too quick to rely on surgery.

    • Becky Bridges Gary

      Yes, doctors are very quick to write a prescription They book at least 4 patients per 15 minute slot and still take walk ins. The message I get is: “here, try this pill and get out of my office, I have other patients to see”.

      • Lawrence

        Just say NO to medications that Drs. push on us. But American’s are addicted to pills which,, as you read all of the stories above, only serve to make us worse in many cases.

  • David

    I was born with spina bifida and have been taking two drugs since I was very little to control epileptic seizures. Even though I have never had a gran mal or lesser seizure since the age of 16(49 years-old now), every doctor I go to is wanting to up my dosage because the levels are not in their therapeutic range. I refuse to do this because if it has helped me for this long, why change? My newest doctor said he would not change a thing and now he has lied and gave me the ultimatum of only supplying me with prescriptions for both meds for one month then I am going to be forced to see a neurologist or no more refills. Is this ethical of doctors to do?

    • neroden

      No, it’s not ethical. It would be a good idea for you to find a truly competent neurologist, of course — general practioners are more likely than specialists to “go by the textbook” rather than paying attention to their patient’s symptoms.

    • Lawrence

      Their “therapeutic” range is frequently fabricated to push more drugs on more people. Much like the new cholesterol levels this past Fall, which many experts denounced. Corruption in the medical field is rampant.

  • differenttake

    I am not familiar with MS, and realize the following may fall under anecdotal evidence at best. But, it won’t do any harm either. A TED talk from Dr. Terry Wahls on her experience with MS. http://m.youtube.com/#/watch?v=KLjgBLwH3Wc&desktop_uri=%2Fwatch%3Fv%3DKLjgBLwH3Wc

  • Lisa Evans Dame

    In case anyone is interested in using essential oils for their MS you can watch this video:
    http://youtu.be/yX_BDqdAS7c

  • Vandermeer

    Love watching the Scottish version of “Dr. Finlay”. It is the story of three doctors in Scotland post WWI. These doctors are passionate advocates for their patients and for free governmental healthcare in Britain. You can find the series on You Tube. You will be hooked on this vintage TV series.

  • jolee6911

    I saw a new way of look at the doctors by talking to other people.

  • Sue

    Annie, thanks for writing this blog. As a provider of education on doctor-patient communication skills, i love hearing about your personal experience and how it has changed the way you relate to patients. You see patients as a people, not cases and can honestly appreciate the importance of working collaboratively with your patients. All the best with your health!

  • Nancy

    It should not require a doctor getting sick to have empathy and listening skills. Common sense dictates that one size does not fit all. Moreover, science isn’t defined as pushing protocols for companies that have a profit motive in selling drugs to patients.

    • neroden

      No two people have the same genetics, epigenetics, or environment.

      Different people respond *massively* differently to different drugs — and even to different methods of administration of the same drug.

      This is all basic biology — people, like all lifeforms, are diverse, people vary. But most doctors don’t seem to know any biology at all. They act like “one size fits all”.

    • Susaan S

      Agreed. However as a former patient of Dr. Brewster’s let me attest that she did not require getting sick to have empathy and listening skills. When I saw her many years ago, she was both compassionate and attentive.

  • http://www.facebook.com/mariusz.smykla Mariusz Smykla

    all or most doctors should suffer for how ignorant they are, I seriously wish to shoot all these ignorant close minded bastards. Good that you could see it from the other side so spread the word

  • JoAnn C

    THANK YOU! I just returned from a neurologist who wants to prescribe me Plavix for T.I.A’s I am experiencing. I take aspiring daily. I DO NOT want to take it. I have had reactions to meds which include lock jaw, seizures, fainting and not being able to breathe. I am only 4’11 and 110 lbs, but my dose would be the same as a 200 lb adult. I am scared to take anything! I want to say no, but don’t want to feel pressured to take it. I know she has my best interest in mind, but sometimes you just have a gut feeling not to follow instructions.

    • neroden

      Your gut feeling is that your neurologist is overdosing. You want to stay well away from that neurologist; that neurologist is committing malpractice.

      If you have to stick with her, tell her in writing that you believe she is overdosing you. That would be the basis for your future malpractice lawsuit.

  • SEM

    you may recall that Steve Jobs was non compliant regarding his cancer, and what would have been a very treatable cancer ended up killing him. In your case, as a doctor, I imagine you are able to read the scientific literature. So why rely on your gut feelings and the New York Times for your decisions? For the sake of your family, particularly your children, I would urge you to become educated and then make the best decision you can. As I am sure you know, some diseases progress without symptoms until it is too late. So a lack of symptoms is no reason to put your head in the sand.

    I am facing similar dilemmas for my son: diagnosed with ADHD and doctors strongly recommending treatment with ritalin or other stimulants. I find these drugs scary because we don’t know what they do to kids’ brain development particularly in the long term. I have read all the scientific literature and am shocked to realize how little is known, despite the fact that ritalin and adderall are the most highly prescribed drugs for teens. I am wresting with the decision whether to treat or not to treat, even though the doctors and the school all urge treatment. what to do?

    good luck with your ongoing decisions.

    • neroden

      Depends what the problems your son is actually having are, how severe they actually are, and whether HE thinks they are problems. If he doesn’t think they’re problems, don’t medicate. If he thinks they’re problems then you have to consider medication.

      Stimulants aren’t that bad. Remember that caffeine is a stimulant but people don’t really seem to mind giving it to children. (Sigh.) Keep the dosage low and irregular and you should be able to prevent any potential adverse effects on brain development.

  • anniecburrows@verizon.net

    I am a psychotherapist, recently widowed, and in my eighties. In my work I often encounter what we call “resistance,” a refusal, more or less overt, on the part of the client to follow our approach to their treament. We consider it our job to try to see the other person’s point of view and adjust the treatment path accordingly. However, if the client simply digs in his/her heels and refuses to engage in a dialogue, we end up having to say that if we are not the right person for this particular sufferer, perhaps he/she would do better with our colleague So-and-So.
    I would suggest to the wrter that she take the time and effort to explain her thinking to her doctor and engage in an exchange of ideas. Perhaps it is a matter of two physicians regarding each other, because of the same training, as people who cannot tolerate “maybe” between yes-or-no, nor “we are both right-and-wrong.” In a thought system without room for compromise there will be “compliance” and “non-compliance.”
    With my best wishes for a positive outcome to whatever treatment choices you make, sincerely, Annie C. Burrows, M.A,

    • neroden

      “We consider it our job to try to see the other person’s point of view and adjust the treatment path accordingly.”

      Yeah. Doesn’t happen very much among MDs.

  • http://www.facebook.com/sandi.freund.5 Sandi Freund

    I was 34 when I was diagnosed (almost 20 yrs ago) with MS, I left that neurologist & never told anyone. Never was on meds! Six or so years ago I went to a different neurologist. I am now told (by yet a different neurologist from the MS clinic) that I am SPMS. I did go on some “minor” meds for a few months as I am currently off work. They didn’t help, so I am OFF everything, except “vitamins” and one “low dose” baby asprin. I eat reasonably clean, like organic meat for sure. Drink lots of clean water also. I love the sun. I do what I feel is right for my body because the bottom line is that IS my body.

    • Jesusdied Andlives

      Sandi, I have a blog outlining how enzyme modified foods have unnaturally high levels of lysophophatidylcholine which makes lesions. I hope the Lord leads you to healing. http://jesusdiedandlives.wordpress.com

  • Eleanor Barker

    Fantastic article. I hope that Dr. Brewster is also investigating her status regarding CCSVI, even though her MS symptoms are minimal. If she has blocked jugular veins, then she can assess this option – which her neurologist is clearly not recommending. If our family had had the CCSVI option 20 years ago, we believe that we would not be dealing with quadriplegia and dementia today.

  • mrawson

    Thank you for your article. I have RA and was given every kind of anti-inflammatory in the beginning which didn’t touch the inflammation. Predisone seemed to do the trick, it took away the pain but the doctor took it away and didn’t tritrate me off and I lost 40 ibs.A total immune collapse. I looked then for a Dr. Jonathan Wright in Seattle who approached me from a completely different direction and introduced me to rotating foods, diet of less carbohydrates, excercise, etc. I moved to the Boston area and a Dr. Jansen in Cambridge gave me nutritional supplements and I gained back from 90 lbs to 100 lbs.I was still in pain but I could begin to sleep better for longer periods of time. To make along story short my disease has progressed but I am in remission from the RA. I am 71 yrs.old retired from music education and chaplaincy and feeling very positive about life. I felt the Rhuematologists were pill pushers because I didn’t get any relief from the pain but Dr. Wright said to me your own body will heal itself if given time and good nutrition or a change in approach. Also, I can now see more clearly that stress was a real player in the flare up and keeping it active so long. Now that I nap daily,and haven’t been working the same I feel very healthy and no pain is in my body. I’m still actively moving, and eating very nutritiously and I have a Dr. who encourages rather than pop pills.

    • neroden

      There’s evidence that autoimmune diseases are caused by a combination of things which all have to happen: first, a genetic predisposition towards an “overactive immune system” of one sort or another; then some sort of trigger to set the immune system going (usually an allergic reaction or an infection), and then something to keep it going (stress hormones, or prolonged exposure to an allergen, or lingering infection).

      You will always have the genetic predisposition but careful living can often remove the things which “wake it up”.

  • Annette Richards

    When I was 31, I was diagnosed with ‘leisions’ on my brain consistent with demylenating disease, otherwise known as MS. For the 3 to 4 years prior, I was experiencing weird light numbness in my feet and lower back, which came and went. My hands also had numbness. Areas of my face too. But when my right eye went dark, I went to my PCP, then eye doc, the neural opthmalogist who advised the MRI resulting in the discovery of the leisions. Well, I knew an autoimmune disease meant I was doing this to myself, in my food choices, activity choices and think choices. I quit that pesky foster care job, took a rest and another job with less stress, cut out diet pop completely and most other non-food items and said prayer to the Universe for an answer to what to eat. Two years later friends of mine introduced me to Sunrider Foods, based on the Philosophy of Regeneration at the cellular level, and I have never stopped eating these foods. My sight returned with just the initial changes I made, but the fatigue and aphasia cleared after two years on these foods. My lungs – I was a smoker – were clear after 4 years of eating these foods: I was swimming lapse and had smoked well over 10 years of my life by the time. EFT helped me get off the nicotine gum, ha ha. I really recommend these foods. I also recommend Western Medicine for broken bones, stitches and serious accidents, maybe a stroke and heart attack, but when it comes to chronic disease, change what you’re eating, manage your stress, get your life choices under control, face what you need to, learn EFT if you need, and stay away from doctors (no offense). I am 49 years old now, I am rarely sick, I have more energy and health than most 20 and 30 year olds. By the way, I did not bother with further tests; I knew what was going on before the MRI. When I left my state job, a supervisor weighing close to 300 lbs and herself diagnosed with MS told me I should stay with the state as I would need the insurance. I said, ‘If I stay, I will need the insurance, if I leave, I may never need the insurance.’ I keep dental insurance. I am well.

  • Leslie

    No one knows what causes MS. Why would you take a drug for something you have no idea of the cause. I was misdiagnosed with MS in 1995 and found out five years ago it was Lyme. I did a year of side effect latent Avonex which gave me suicidal ideation. I tried to get into a study for the drug then called Antegren (which has changed names many a time because of the deaths associated with it) and tried Copaxone, but developed large welts, temperature, body aches. All this for something I didn’t even have! I did do CCSVi. The only thing besides the antibiotics that did anything.

  • AnnaBeth

    Wow. Ditto. Thank you.

  • John

    Dr. Brewster,
    A couple of years ago, I fell from my bicycle and tore a rotator cuff. At the time of the fall I had a large ganglia on each wrist. I chose acupuncture and chiropractic treatment, against medical advice. Today, I have normal wrists and I swim 4000 meters in a setting, mostly butterfly.
    Respectfully, Doctor, the physician advises, and the patient decides. I also am a high achiever, but I am the bane of the faculty at my university. In order to truly achieve, you must be willing to make your best decision and require the help you are paying your physician to give.
    I hope I have helped.

  • batmantis25

    I realize I’m going to get down-voted to hell for this, but I still fell compelled to write it as this just really bothered me to read.

    I’m honestly trying to understand how someone who has devoted their life to a rigorous scientific method of examining the body and disease and testing drugs by their efficacy and not by feelings or emotion can suddenly just embrace an admittedly “irrational” approach. It’s not “somewhat irrational.” It’s just plain irrational.

    “What I wanted from my doctor — but didn’t get — is for him to see that I was a medical resident with a two-year-old child and going through a divorce. That I yearned for more children. That I wasn’t ready to accept a chronic illness into my life. I wanted him to consider the context of my life, but he didn’t. I left his office (practically ran) and didn’t return for five years.”

    In what respects is this approach healthy? Are you suggesting that you couldn’t manage the disease while managing your life? Do you think that simply ignoring the issue would make it disappear or somehow lessen the reality of the situation?
    I’m still not understanding what you actually wanted from you doctor. Did you want him to withhold the diagnosis? Would you rather him lie to you and lie to himself (disregarding his oath) and pretend as if you didn’t have this condition? Would you like him to sugar coat it for you?

    You mention acupuncture as if it is a recognized treatment that has effects beyond a placebo. You openly admit to completely irrational confirmation bias when reading about your drugs. You say that you avoid reading the relevant studies that you are clearly trained and equipped to do and yet you let a single NYT article validate your decision to quit medication entirely (even though the article makes it clear that the drug is still effective for it’s approved use).

    At what point are we allowing ourselves to just abandon our rationality because it just “feels right.” And, somehow, we are going to convince ourselves that this makes us better people. That somehow we are embracing something true by ignoring what is real. There are philosophical implications to this approach which are troubling and dangerous. It’s the same approach that leads parents to stop vaccinating their children for deadly and crippling diseases. Would you encourage a parent to ignore the risk of polio because “it just feels right” and because “they are in charge.” Only to see that disease come back because we felt ok at the time?

    I frankly don’t understand what you have written. I don’t recognize your experience or understand why it should be celebrated or accepted. I’m not trying to be harsh or attack you for suffering this disease. Certainly it’s no fault of yours that you have to go through this and I’m sure the entire experience is confusing, and causes conflicts to you in many parts of your life. But I just can’t comprehend why, as a doctor and as a mother why you would take this time and effort to endorse a rejection of reality that doesn’t seem to serve any good. It might fulfill some irrational desire you have, it might give you a sense of control over your life. I’m not even really trying to attack your reaction to the disease. I’ve never been diagnosed with something similar, I can’t walk a mile in your shoes and maybe I would fall in denial if it happened to me too.

    The problem is, you sat down, and thought about this piece. You wrote it, and re wrote it and decided what to write. This wasn’t a reaction, it was a conviction and something that you made a decision to encode and endorse. That’s what I really don’t comprehend.

    I don’t understand the approach of ignoring pain to feel better. You might as well try ignoring rain to feel dry. We should press on trying to understand what is around us and inside of us and not crawl into a protective shell of emotion and irrationality whenever it feels right or when the alternative feels to difficult to bear. It might feel convenient but that doesn’t make it prudent. Also, it’s one thing for a doctor, who completely understands the risk factors involved to make this decision. It’s another to suggest that patients (who often don’t understand basic statistics much less the actual risks involved) should feel empowered to make the same decisions.

    I’m sure I’m going to be pilloried for attacking an eloquent, intelligent, sick woman. I’m sure that this will be buried beneath a pile of other comments and probably negative responses. I’m just asking why we should actually value and recommend the approach you endorse here. What does it give us? What is novel about this that I can’t get from the believing in the healing power of crystals or thinking that disease comes from bad luck and star aether? And where will it take us if others decide to follow the same path with the same “logic?”

    That’s all I really want to know.

    • Kris

      OMG thank god somebody finally wrote something with some scientific merit. I can understand being in denial – but this is damaging and hurtful to so many. A physician! A physician! Writing this!

      If only someone could get their license to practice medicine revoked for making recommendations based on feelings, not scientific research.

      I could ask medical advice of a teenage babysitter and feel like I was in safer hands. Are medical schools reading this?

      • Chuck Palson

        “If only someone could get their license to practice medicine revoked for making recommendations based on feelings, not scientific research.”

        Umm – be careful what you wish for. If your suggestion were taken seriously, I suspect that the number of doctors still practicing would not be be enough for one medium sized city. I am not a doctor, not even in the health care field, but I have seen perhaps 15 doctors over the last decade; all of them are perfectly happy to be ignorant of the scientific research that produces the drugs they prescribe.

        It’s not just my fifteen doctors. It’s widespread polling of doctors. The vast majority say they get their information from either their friendly drug salesman or other doctors, NOT from reading the actual research. Asked about it, it’s always the same: “We just don’t have the time to read the actual research, and we couldn’t possibly read it all.” PCPs can legitimately make this claim, but not specialists, especially when a google RSS will instantly send you an email of any new development in the chosen field.

        The worst of it is that when I insist I don’t want the drug or treatment based on the evidence, they refuse to keep me on as a patient.

        The fact that she does not read the research is the norm, not some quirky exception. That’s what most doctors say when they respond to polls on this subject.

        • neroden

          Bingo. I have inevitably done more research than my doctors when it comes to, well, anything whatsoever. I’m smarter than my doctors and I’m better educated. Sometimes they’re better at clinical examination, which is lovely when it happens.

          But I can spot uneducated bullshit pretty damn easily, and all too often, doctors spread it wide and high.

    • Gerard Loftus

      As a matter of fact Acupuncture has categorically been proven to work under MRI conditions seems my educated friend your not very well informed as to your attack I think you have misunderstood this humans cry for help after all been a Doctor she is also human, and Drugs from Doctors (NSAIDS) I would say the highest killer in America, I can see who your god is the: Pharma: they don’t work for Health they work for profit, at least this woman has spoken with her heart. Strange that you should talk of Science and western teachings and they cannot reach the grey matter of the brain where as Acupuncture has been proven to effect the grey matter of the brain and done under clinical conditions a few years ago. Strange though I do not hear the good Doctors shouting this out aloud but are we surprised no drugs profit and great backhanders.

    • salty

      Her point was, that even though she has the diagnosis, the meds her doctors were pushing were not appropriate at that time….the drugs were making her sicker than the disease was! “You”ll live longer but be miserable the whole time” is not everyone’s preferred option.

  • Trebla

    The other story. I too am a physician from great schools & the top of my class. Four years ago I developed what became grade IV (widely disseminated) melanoma- a deadly skin cancer. After surgery, radiation Rx, I had three separate trials of chemotherapy. All made me ill, nothing stopped the melanoma. I was down 40 lbs, could not walk outside & had 1-2 liters of fluid taken off the right lung every week. I called my kids home to say goodbye. My oncologist suggested trying one more drug- from the Univ Calif and Big Pharma. It was $30k per dose.
    I just said no, just leave me die- the hospice nurse had already come to my house. It was my wife who talked me into one more try.
    Short story- one injection cured me. No trace of tumor one year latter. My PET/CT scan is a slide in my oncologist’s PowerPoint presentation.
    The take- home: if I had followed “my gut”, I’d be dead today rather than seeing my kids graduate from grad school.

  • Teresa Jesionowski

    Here is some info about diet and MS–Dr. John McDougall and Oregon Health Sciences University.
    http://www.drmcdougall.com/foundation.html

  • http://www.facebook.com/profile.php?id=741924006 Lori Batchelor

    I want everybody who has MS, or knows someone with it, to be aware of the only treatment that has been shown to actually improve some symptoms–Venoplasty for chronic cerebrospinal venous insufficiency (CCSVI). This procedure may not work for everyone, just like all medical treatments, but it is definitely worth being an option to try, especially for people with no other form of treatment available! I am an example of someone who had excellent benefits–many of which were even “measurable”. Since I was secondary/progressive, there was nothing for me except to just wait and get worse. After the treatment, my balance has improved–my neurologist could see that I didn’t fall over when I closed my eyes during his test–for the first time in 20 years! He could also see improvement in my drop-foot and right leg strength. Some of my other improvements weren’t “measurable”, such as no more weekly headaches and no more heat intolerance but they sure mean a lot to me.

    These are a couple of videos I made:

    Walk a mile in my shoes
    http://www.youtube.com/watch?v=yrH9GH0N4ck

    1 year “Angioversary”http://www.youtube.com/watch?v=9BNL42wcFLE&feature=youtu.be

    • Jesusdied Andlives

      I believe in CCVSI since lysolecithin demyelinates and causes vasoconstriction. I have information about foods and products to avoid to try to not relapse. http://jesusdiedandlives.wordpress.com

  • http://www.facebook.com/lorenn.walker Lorenn Walker

    Thank you for this great article and all the comments too from everyone willing to be the “best experts” of their own health and their bodies – Norman Cousins would be thrilled with this piece and I wish all docs and would read his book Anatomy of an Illness and Jerome Groopman’s How Doctor’s Think. Thanks again!

  • Susan of Brookline

    You sound like a really thoughtful, honest, sensitive person, Dr. Brewster. I think it is so important for doctors to treat patients with the basic respect demonstrated by explaining options, engaging in thoughtful two-way dialog, since ultimately it is the patient’s life and body at stake. I think it is conversely important for patients to understand that doctors are human beings too, not to be idolized and/or devalued, but to be worked with respectfully. When I find doctors who can partner with me in my treatment I keep them. When I find doctors who I feel judge me, or don’t bother to take the time to have a dialog with me during which they take the time to educate me about options, and listen to my opinion, I eventually move on from them. In my experience, there are, in fact, plenty of doctors in each camp.

    • neroden

      In my experience there are very few doctors in the “good” camp.

      I don’t think this is the doctors’ fault. I think this is the fault of the insurance companies and “medical corporations” who force the doctors to see the patient for only 15 minutes. I think this is also the fault of the hazing-style medical “edumacation” in the overpriced medical “schools” which leave doctors worrying about a huge student loan debt, and with no actual experience.

  • Michele LuValle

    Ah-ha! You are your own best consultant, Dr. Brewster. Thanks for this article.

  • deh stanford classics ’84

    How I wish you were single.

  • julianpenrod

    As is so often the case, much of what consternation there is in this issue derives from the preconceptions.

    Do doctors really know what’s wrong?

    If they know what’s wrong, do they really know of a cure?

    If they know of a cure, will they prescribe it, or will they order something to ameliorate the symptoms, while also piling on other symptoms to be handled by some other expensive drugs? When torpedoing an aggrieved’s case against a corporate crook, it can be very helpful to keep the aggrieved too sick to properly pursue justice!

    Even when they act “honorably”, or within a stone’s throw of it, doctors can be surprised when a “cure” works. Many people still fail to realize just how varied and, frankly, unpredictable, living things, and, particularly, humans are. Like the woman who had a concussion and spoke French withoiut ever having learned it. And before defending “doctors”, many should ask how many know, before surgery, that surgery never solves a problem, it only creates new ones; as a planned injury, surgery requires heavy dosing with antibiotic and, even then, has a likelihood of blood clot damage?

    • neroden

      Surgery occasionally solves a problem — for instance, in cases of acute appendicitis, or gangrene. Or, indeed, certain cancers. There are other examples. There’s a reason surgery is still used.

      Surgery is seriously overused, however. So are prescription drugs.

  • MargeD

    This is a bit beside the point but I’ll share anyway. My sister-in-law’s sister was diagnosed with MS six years ago. She went through three years of awfulness, without health insurance, before being diagnosed with Celiac Disease. After adopting a gluten-free diet, all of her MS symptoms have disappeared. She continues to be in good health.

    • neroden

      Doctors are, far too often, unwilling to admit that they DON’T KNOW what they’re looking at. I much prefer a doctor who says “I am not sure what you have”. Because then there’s somewhere to start from.

  • frank ryan

    I have absolutely no problem firing a provider when the advice given is clearly bad for my health, or meant solely to increase the providers bank account

  • Karen Copeland

    Hi! Always happy to hear from another ‘non-compliant’ MSer :o) Well, whatever an MSer is. There have been so many misdiagnoses such as Lyme Disease and Cpn being dxed as MS. and probably lots of others will eventually be uncovered. I was diagnosed from an MRI showing lesions and anecdotal evidence. As I understand it, conditions other than MS can show lesions and I find it hilarious, in a black humour sort of way, that anecdotal evidence gleaned from chats with me is ok for making a diagnosis but anecdotal evidence is absolutely forbidden should something come along that helps like venoplasty for CCSVI. That, according to my Ex-neuro is just a placebo effect.
    Right now I am working to get tests for CCSVI, Lyme and Cpn – things he should have done before making a diagnosis but wouldn’t.

    I also think it is funny (as in strange and misrepresentational) that they can palm these drugs off on us as drugs that slow down progression. You went for years between flare ups. So did I – decades in fact. Those drugs were not created that long ago. How do they know?

    And he offered nothing to alleviate even one symptom. I found out on my own that Magnesium Oil would relieve the burning in my feet and legs. I found out on my own that Honey (real honey,not that grocery store processed to death type) and cinnamon would get rid of my chronic bladder infection brought on by messages brain to sphincter to my bladder to urinate, not getting through.

    To add insult to injury, he called me a ‘cultist’ for being interested in Dr. Zamboni’s venoplasty for symptom relief. Yup! I am a proud non-conformist too! :o)

    • swirish

      The RTOG is currently doing a research study on Manuka Honey and patients receiving radiation therapy to the chest. We have most of our chest radiation patients using this honey, and also olive oil, as a preventative measure for radiation side effects. Sometimes the answer is not more drugs but diet and holistic remedies.

    • neroden

      “Right now I am working to get tests for CCSVI, Lyme and Cpn – things he should have done before making a diagnosis but wouldn’t.”

      That’s what’s wrong with doctors, in a nutshell. When you know better than the doctor, he should freaking listen and learn, rather than refuse to test.

  • RobinGB

    As often happens when I read this type of article and the comments below, I am thankful that I have had such wonderful doctors in my life. They listen and they advise, they question and listen some more. I ask about alternatives and they give me helpful answers. I have never been a meek, quiet patient, (or anything else) but I am sure an angry, confrontational doctor would have intimidated me a great deal. I am lucky to have good health, and lucky to have my wonderful doctors when I need them.

  • http://www.facebook.com/gerald.grieve Gerald Wm A Grieve

    Very good article!!
    How many other doctors find themselves in that position but say nothing? Not just General Practitioners but neurologists. Too many are afraid of centure from thier piers. Every time I see my neurologist and refuse drugs but suggest any other option she simply gets out of her chair and says, “see you in 3 months”. When I was first told I have MS, I tried her drugs and got worse very quickly but kept trying, in spite of side effect. When she suggested another and I mentioned the side effects of that she got hostile with me. Not a doctor thing to do. When I asked what causes MS, she had no answer but said these drugs “seem” to work. Why if they don’t know do they push the meds(?) and not open thier minds to other options.

  • Roberta Straus

    Many thanks for this great article! I have had M.S. for more than 30 years and have chosen to reject DMD’s and all of the ridiculously expensive pharmaceuticals which are supposedly “preventing your disease from getting worse”…How does anyone know how they’d be without the drug? What I know for sure is that almost all of the neuros are out speaking on behalf of big pharma and getting mighty rich….hmmmmmm. Something is sure rotten in Denmark. And all of us are just as sick or stable as ever. Still, no cause and no cure. I hoped I would see one in my lifetime, but it is not to be. I am not even convinced that M.S. is an auto-immune disease. They assert it, but we do not need to believe it. So, I agree. Try to eat well, exercise, minimize stress and do what it takes to be at peace.

    • http://www.facebook.com/profile.php?id=741924006 Lori Batchelor

      Diagnosed with MS in 1990, I became secondary/progressive before any disease-modifying drugs were available so I was just supposed to accept getting more disabled. In March/2011, I had venous angioplasty for CCSVI and many of my symptoms that had been attributed to MS improved. My quality of life has skyrocketed!
      This is one of my before/after videos: Walk a mile in my shoes
      http://www.youtube.com/watch?v=yrH9GH0N4ck

  • Cel O.

    So well and beautifully written. Have you ever thought of writing your autobiography? I bet it would make a great read….who knows….maybe a best seller!!

  • Charles Macknee, MAIS

    Though it’s not discussed much in journals or the popular media, I think it is very interesting that two of the biggest challenges we face, exquisitely complex cancer and chronic nervous system disorders…are both intrinsically linked to the finite human lifespan, and indeed, our profound mortality on this planet. We pour billions into desperate searches for miracle “silver bullet” pharmaceutical cures for poorly understood “diseases” while allowing families and patients to go bankrupt struggling to provide even basic holistic support outside the insurance-covered biomedical realm…which, of all the crucial social, mental, emotional, spiritual, and physical needs of the patient, effectively addresses only the latter…and not even THAT always successfully! (See dramatic increase in iatrogenic diseases, for instance)
    Unlike perhaps many other sectors of a capitalist-based economy, profit and healthcare, as we see time and again, do not mix very well. The superior technologies and education of our American capitalist-based medical system, once trumpeted as the main elements of its superiority, are found to be increasingly useless as ‘weapons’ against the onslaught of highly idiosyncratic and chronic disorders such as many forms and variants of cancer, MS, depression, addiction, obesity, and a host of other CNS diorders, including what we currently call “Alzheimer’s” disease.
    Serious and comprehensive reform, at least of the key obstacles to coverage of alternative, holistic, and evidence-based therapies including psychosocial supports that are currently maintained by our outdated and unsustainable medical/industrial complex, is needed urgently. Yet that very same complex resists any such reform with all its might and influence.
    Come in Houston…we have a problem out here….

  • Sweetly

    Dr. Brewster indeed sounds like “one of us,” a typical MS patient who listens to her body and her intuition and makes the choice best suited to the moment. I appreciate her honesty. So often I’ve come away from the neuro’s office grumbling “let’s see what you would do, doc, if you had this disease for just one day, ONE day!” Though I’m not glad that Dr. Brewster has our disease, I do feel a bit vindicated by her dilemma of having to straddle that fence between being a doctor and a patient. I don’t think her musings will make doctors understand our position any better, you truly have to be there to understand–but her honesty will surely be a comfort to MS patients.

  • john tod

    I sugest to everyone who takes any kind of daily meds to see a good herbalist.
    Herbs don’t cause bad side effects, they cost very little, and for me they work better than the pills my doctors put me on!

    It can’t hurt to try!

  • Beth

    What a refreshing article to read, especially from a doctor. Good for you Dr. Brewster! I was diagnosed with MS a dozen years ago. I trusted my neuro when she said I must inject my body with an immune modifying drug, take your pick! I chose Copaxone because I didn’t want the flu like symptoms the interferons had. I stayed on that drug for 10 years, now I am so sorry I did that. I quit over two years ago, no problems, other than my immune system is shot! Was it the drug? we’ll never know, but it’s possible.

    We now know MS is vascular. YES, the autoimmune theory has never been proven. This has. It is most likely caused by insufficient blood flow from the brain and/or spine through the internal jugulars and azygos veins to the heart. We are lacking oxygen. A simple solution to a problem plaguing us for over 150 years! Neuros and pharma have had many years to prove the autoimmune theory with no success, yet they guilt us into taking harmful drugs. Most docs have believed the drug reps who sell the useless drugs. Why in the heck would anybody think lowering your immune system is a good thing? We need our immune system!

    Since 2009, when Dr. Zamboni from Italy published his data about CCSVI, we all have hope. I am so grateful to the many researchers and docs who are brave enough, like Dr. Brewster, to think for themselves! There is so much data now supporting this theory, but many people haven’t heard about it. Not one comment here about CCSVI. Pharma’s hold over the FDA and docs is so powerful then add the power of the MS Societys, media barely touches on it. Thanks to social media! Not only do we hear about a simple venoplasty could help with symptom relief for about two-thirds of those treated, we also know that improper alignment of the neck and even possibly a bacteria or virus could trigger MS. It’s a perfect storm. This is an exciting time in medical history and I am so proud to have been part of the study! LISTEN UP ALL……..follow Dr. Brewster’s lead, knowledge is power and we have it!

    • http://www.facebook.com/profile.php?id=741924006 Lori Batchelor

      I am a CCSVI success story and have been trying to spread the word.
      Diagnosed with MS in 1990, I became secondary/progressive before any disease-modifying drugs were available so I was just supposed to accept getting more disabled. In March/2011, I had venous angioplasty for CCSVI and many of my symptoms that had been attributed to MS improved. My quality of life has skyrocketed!
      This is one of my before/after videos:

      Walk a mile in my shoes
      http://www.youtube.com/watch?v=yrH9GH0N4ck

    • neroden

      There are autoimmune diseases (lupus comes to mind). MS hasn’t been proven to be autoimmune. Nobody is quite sure how autoimmune diseases work, either; there seems to generally be an outside trigger which causes immune system confusion, but very few doctors (and nobody in Big Pharma) wants to think about eliminating the trigger.

  • eve

    Great article, thank you. I too have MS ( for 20 years) and am also still very active. Your point about the unpredictability of this disease and how that effects medication decisions is powerful. I have been relatively symptom free for my entire disease (so far), but have been on immune-supresants since the late 1990s, feeling like crap much of the time from them. Diet and exercise have been at the center of my life-style, though these were never a suggestion of any doctors. I too have been very lucky. At any rate, I appreciate you voicing these issues. It’s nice to hear.

  • Ryan Spaceman

    A few other things. I understand with minimal symptoms its a hard choice to make for MS patients. However, to the point of preventing disability progression, the meds for MS have only been used for about the last 15 years and its takes long, large, extensive studies to prove things like prevention of disability long term in a disease like this, which is the reason the studies in some cases don’t exist for this disease in proving that. We haven’t really had the time to prove it.
    Also I have certainly been on the other side of this too with my daughter. She has a serious kidney condition that requires long term imunosuppressants, steroids, and many treatments. Its not like I haven’t seen the other side of things as the father of a young patient with a serious disease. Those medications have allowed her to live a pretty normal life though rather than being constantly hospitalized for respiratory infections and failing kidneys. If we were making decisions based on emotion rather than sound medical advice, I would expect, and I know her doctor, would tell us even if we didn’t want to hear it

    • http://www.facebook.com/profile.php?id=741924006 Lori Batchelor

      This is the study that says the interferon drugs don’t slow progression of disability, as mentioned in the article. It looked at as long a term as possible! It was published in the prestigious Journal of the American Medical Association.
      http://jama.jamanetwork.com/article.aspx?articleid=1217239

  • MarO

    An incredible letter. Validating my thoughts now for the last 8 years. I too am from the medical profession and chose not to take the immune modulating drugs. I tried to take one of them for a year with horrible “flu like” side effects. My neurologist over the last few years has quietly accepted my decision not the take these drugs. I don’t know if he has labelled me “non-compliant” or not but if he has, it is OK with me. I trusted my “gut” instinct more than my medical knowledge to hold back on these meds. I trust my insight of my own body and try to practice eating right, exercise and reducing stress. Pharmaceuticals have their place in this world and have produced miracles but not all of them are good. I am also painfully aware that it is the “investors” in pharmaceutical industry not the scientists who have the final say and their motive is to make money not consider the side effects of these drugs.
    Dr. Brewster I congratulate you on your honesty and wish there were more physicians like you!!!!

  • Ryan Spaceman

    Every patient has a right to make there on decisions on what to do. Doctors are their for advice. She, like many patients though, seems to want to be told that if you use diet, exercise, and everything they can with no side effects, they will be fine and its all OK because it works just as well as the medications.
    I am not at all against alternative therapies, diet, exercise. Those are all important and should always be emphasized. But in a disease like MS, the data is clear. The medications work at preventing relapses and disease progression.
    I disagree that making the decision on an emotional level is the correct one in a case like this. Emotional decisions can lead to incorrect, life altering decisions. Like I said, everyone is free to make their own choices. I deal with this in MS patients every day. If you don’t want to take the meds, thats perfectly fine, its your choice. But she seems to want the doctor to provide her with some sort of validation that its the right choice and not act like its a potentially bad, life altering choice in the long run. Sorry, we can’t do that. The studies and the research, which is what we have to base our deicsions on as doctors, don’t show that. I can’t defend myself from malpractice when things go poorly based on wanting the patient to feel validation and emotional comfort in their decision. I can’t sit in a court of law and tell a defense lawyer I would have recommended meds, but, well, I didn’t want to make her feel bad. If she ends up paralyzed and incontinent 15 years from now, her emotional comfort isn’t going to help her walk again.
    Everyone should follow good diet, exercise, stress relief, sleep advise, whether they have MS, Diabetes, migraines or are perfectly healthy. That isn’t always going to keep your disease from progressing however and a doctors job is to be realistic about the worst case scenario and doing what we can to prevent that. We can’t change our advise and opinions just so she doesn’t feel like a “bad” patient

    • neroden

      “I disagree that making the decision on an emotional level is the correct one in a case like this.”

      This is the thing, though: making a decision based on intuition is NOT the same as making a decision based on emotion. I, for instance, am well trained in multiple fields of science and a voracious reader of studies. When my gut tells me “that’s not right, that doesn’t fit my symptoms, that drug doesn’t help people with my problems”, it’s because *I know better* than the doctor.

      When doctors recommend bullcrap based on bad research, Pharma advertising, and desire to make money from surgery, they deserve to be shut down for malpractice. They rarely are: they continue to butcher their patients wilfully.

  • colliemomx2

    I totally agree, ” I have been guided by a deeper, emotional, intuitive force that is hard
    for my doctors, and many other people, to understand.”, is the strongest
    piece of advice in this article.” I believe you have to go with your gut. It’s your life, you should be able to decide what’s right or wrong for you without judgement. Especially in this case, nobody knows how your disease will progress or not. I sincerely hope it does not, and am glad that you have good quality of life. Good for you!

  • Margarita

    Thank you so much for this piece, Dr. Brewster. I wish that doctors were taught to honor both the innate healing response of the human body and their patients’ own knowledge of themselves and sense of what is right. I’ve had so much experience with doctors who would write me off any time I would disagree with them. Many don’t like being asked too many questions, and I had one quit on my father when he was in the ICU because I refused a very expensive medication for him that the doctor could provide no real justification for given that the test results hadn’t come back yet. Where do doctors get this sense from? Especially given the fact that they can really say (with a straight face) little of certainty with regard to how any given patient is going to react to any one form of treatment. It’s nice to know that there’s at least one doctor out there who knows she’s human just like the rest of us.

  • Dexter

    Dr Terry Wahls at the University of Iowa http://www.facebook.com/#!/Dr.Terry.Wahls
    http://www.amazon.com/Minding-Mitochondria-2nd-Edition-progressive/dp/0982175086/ref=sr_1_1?ie=UTF8&qid=1346015480&sr=8-1&keywords=terry+wahls
    She has blunted her MS symptoms with her diet and with supplementation. This TED talk is the best. http://www.youtube.com/watch?v=KLjgBLwH3Wc
    Good luck with your journey.

  • shoshi

    i read what you wrote, i feel as if you live in my head and wrote
    whatever i think, it is very rare that i can meet a person who thinks
    liike me!!!!!!!!!!!!!!! amazing

  • http://www.facebook.com/jessie.kendall.10 Jessie Kendall

    I wonder why all medical schools don’t include a semester of required training in osteopathic medicine. It seems the western world could benefit from teaching our doctors to treat the whole person and learning how to help patients listen to the body and let the body heal itself before immediately prescribing something. Could it be that drug companies have too much control over the industry?

    • LT Caregiver/Gerontologist

      Let’s see…They
      virtually train the doctors, providing the information, facilities, equipment,
      drugs, grants, and funding the most costly and influential govt lobbying
      efforts by FAR…changing laws to suit their bottom line, biasing policy to
      increase sales, and discourage alternatives. They pour millions if not billions
      into advertising and free drugs and/or supplies to both doctors and laymen;
      then children are born into this pill culture, and the next generation of
      customers is thus created. Meanwhile these hundreds of millions of health care
      dollars that could have been spent on prevention and/or effective alternatives
      are diverted from such alternatives and support the status quo.

      They are sued
      regularly, and regularly lose the suits which range from false advertising to
      multi-billion dollar class action cases that reveal culpable participation in a
      knowing deception of the public regarding often horrific side effects of their
      medications. Many of those meds, including some of the most expensive, are eventually
      shown to have no greater therapeutic effect than a placebo. The popular media,
      and indeed many of the medical journals themselves derive big revenue from
      BigPhrama’s advertising, thus they will do what’s necessary to protect their
      sacred cow.

      And it’s not just
      BigPharma, either. All those who profit from Pharma stock share some blame for
      the perpetuation of this miserable (and often criminal) state of affairs, which
      guarantees the ongoing manipulation of the legal/biomed/insurance complex that
      has become a virtually intractable feature of American society.

      So, could it be that drug companies have too much control over
      the industry?

      • http://www.facebook.com/lawrence.ferrara.7 Lawrence Ferrara

        So true. And if you remember from the article, Drs. can label a patient ” Non-compliant” which is sufficient grounds drop the patient from his/her care.

        Under this threat, patients will be needlessly taking dangerous drugs against their will.

    • http://www.facebook.com/lawrence.ferrara.7 Lawrence Ferrara

      So true

  • Christina Buck

    When I was 35 (I am 40 now) I was told that I had MS, despite the fact that EVERY SINGLE test done to prove I had the disease came back negative. Because I am white and female and (was) young the MS specialist (my 2nd neurologist) insisted I had MS. She wanted me to start injecting myself with Copaxone immediately. I refused. I told her she had not proven to me that I had MS, that I did not believe I had MS, and that I would not inject myself with a toxic, expensive medication simply because she was telling me to do so. She was FURIOUS. Also, my illness progression had a been fast and furious (there was no relapse or remitting in my symptoms) – so I suggested that if I did have MS wouldn’t it mean I had primary progressive MS? She said “we don’t diagnose people with primary progressive MS.” How convenient for her. I subsequently left Seattle to return to NYS to live with my mom. I saw another MS specialist who did not believe I had MS. He sent me to Columbia Presbyterian in NYC because he thought I had ALS. What I have is PLS (Primary Lateral Sclerosis) – which is a diagnosis of exclusion. Basically I have been tested for every disease they KNOW exists and are able to test for and since I have none of those, I have PLS. ALS is upper and lower motor neuron disease. PLS is just upper motor neuron disease. At age 40 I wear braces on my legs in order to walk without tripping over my own feet and I use a 4 wheeled walker with a seat 24/7. I take medications to manage spasticity (every six hours) and bladder urgency/frequency (once a day). I am now on my 5th neurologist. I know that if I had allowed that neurologist who insisted I had MS to bully me into injecting myself with Copaxone I would have been wasting my time and money and possibly making myself sicker in the process. There are other PLS patients I have met via an online support group who were also misdiagnosed with MS and some of them did inject themselves with these drugs, some for decades. I know my doctors think I am a difficult patient. I don’t care. It’s my body and my life and I refuse to be bullied by people in white coats. What I’ve learned going on 5 years now with this progressive, degenerative neuromuscular disease, this chronic illness, is that most of my doctors have no idea how to deal with health problems created, exacerbated by, or co-existing with my primary illness. At one point I had become pre-diabetic. I was told “exercise and eat healthy and lose weight and you won’t be pre-diabetic.” Turns out one of my medications, which I was taking for pain and had been on for four years, was making me pre-diabetic. I am the one who figured it out. I went off the medication and IMMEDIATELY my blood sugar numbers normalized and I also lost 40 pounds. The only safe way to be a good patient is to be a difficult patient. Ask questions and refuse treatment if you believe it is what is best for you.

    • Shirley Renshaw

      THANK YOU, THANK YOU Christina Buck … for your frank and honest comment. Thank goodness for the internet more open minds and being able to share our experiences. I was one of the lucky ones (I guess) that didn’t qualify for the DMDs. That is the ONLY thing I am thankful for by these neurologists denial. I have read and heard so many stories about people being belittled, humiliated, bullied and fear mongered into taking the neurologist instructions … AND many did. It has only been about four years that the stories are coming to the surface and it is brave people like this wonderful Doctors’ article and your comment we can truly see where the patient stands in the pro pharma world. I have the diagnoses of MS but now I know it has been misdiagnosed as well. I was never tested properly and because of one lesion in my brain and spine via one MRI. I now have been tested and treated for CCSVI. I have stopped dealing with neurologists since 2005 and have not missed or wanted one since! These days you have to your own advocate … such a sad statement to make about our health care system and those few closed minded doctors. I am Canadian and our health care has become political more so than to benefit our health.

    • Michele LuValle

      Bravo Christina!

    • Vandermeer

      God bless you Christina!

  • skeptic

    As a Harvard and Stanford graduate, the author is not, as she says “like most doctors.” Most doctors are mediocre students who manage to graduate, do well enough on the MCAT to be admitted to medical school, survive the sleep deprived hazing that we call residency, and become proficient practitioners of their craft. In an otherwise refreshing article, the opening perpetuates a myth that doctors are more expert in their field than carpenters are in theirs. Both are usually good at what they do; both know little about what they do not do daily; and both make mistakes that we should feel open to question.

    • stonecold

      Well said.

    • Charles Gato

      I had to laugh at that too. I long ago noticed that Harvard alum will work their college pedigree into the conversation within your first five minutes of meeting them. True to form, Dr. Brewster managed to get it into the first paragraph.

  • JenniM

    I think Annie’s comment, “Instead, I have been guided by a deeper, emotional, intuitive force that is hard for my doctors, and many other people, to understand.”, is the strongest piece of advice in this article. Quieting one’s fears and listening to what one’s body has to say is THE most important part of dealing with a disease, especially a chronic one. It’s also important to recognize and accept that decision making is a process, which can change radically as one goes through it. Twenty months ago I was diagnosed with uterine fibroids and was adamant about not having a hysterectomy. As a Reiki practitioner I focused on diet, energy work, and alternate treatments but that did not reduce the fibroids. I then used an IUD but that didn’t help any either. So finally, after over a year of trying alternate treatments, I agreed to surgical removal of the fibroids but not a hysterectomy. But then, three days before the surgery, I gave the doctor permission to remove my uterus if she got in there and found it riddled with fibroids. She encouraged me to consider just having a vaginal hysterectomy because it was less invasive than the planned surgery. And after listening to my body and doing a lot of praying I agreed and it was the best decision I could have made. However, if I hadn’t gone through that decision making process I wouldn’t have felt as confident and secure in having a hysterectomy if I’d done it right at the beginning. And fortunately I had a doctor who was willing to walk through that process with me without making me feel ignorant or ashamed.

  • herm

    I am a general neurologist myself and usually discuss with patients that the benefit of at least the classic disease modifying therapies is modest at best.
    One contributor to doctor’s aggressiveness are th patients: I often made the experience that a subset of patients with ill defined symptoms and minor MRI abnormalities “wants” a diagnosis of MS and also requests aggressive treatment, likely for secondary gain, and there is some literature
    http://www.neurology.org/content/78/24/1981.short
    Some patients make doctors feel positively uncomfortable for even suggesting that they may not have MS or that (for instance in a patient with many years of inactive disease) not treating may be a reasonable option for some.

  • homebuilding

    Doc, please don’t ever repeat the nonsense that
    ‘no one ever likes to leave the office empty handed.’
    I will surely take my chances on letting time and my body
    attack a problem if the diagnosis isn’t severe (most are not);
    the diagnosis remains unclear (often the case); or if proposed
    treatments and medications are unclear, potentially harmful,
    and/or far too expensive to pass any cost-benefit ratio test
    (also, a too-common possibility).
    Just remember that the USA leads the world in medications taken,
    procedures performed, hospitalizations and deaths resulting from
    procedures and medications–while being far from the best medi-
    cal system in terms of life expectancy and infant mortality.
    More waiting, more checking, and more caution can be a really
    good thing–and THAT needs to be repeated in medical schools,
    too.

    • http://twitter.com/DrBonesMD Stephen Rockower

      Homebuilding: There are lots and lots of patients who are sorely disappointed when they leave my office with recommendations for exercise and maybe some ibuprofen. As an orthopaedist, I don’t usually get involved in MS treatments, but your view of “taking your chances” is admirable, but not likely to get repeat customers for your doc. Americans like the latest and greatest, and many will not be satisfied if they don’t get it. There are those who gravitate to the “do everything possible” doc, and those who prefer the “do only what is necessary” doc. The trick is knowing which type of patient is sitting in front of you. Taking chances isn’t always the smart thing to do, either, as the current crop of Pertussis victims and their families will tell you.

      • mws

        Thank you for the article. Sometimes one needs to think outside the box. Just cause a dr prescribes something, it may not always be right for you. I would greatly appreciate knowing a name of any your Neurologists. I may have MS? Have seen a lot of Drs but no break through in the cause of my symptoms. Reading your articles gives me hope that time might be on my side….

      • neroden

        I have rejected recommendations for exercise from idiot doctors, who didn’t listen when I explained that exercise just made my muscles hurt, it didn’t make them stronger or more flexible, and no, the hurting didn’t stop after six months of regular exercise. (I eventually got a fibromyalgia diagnosis. Which isn’t a diagnosis, either. Some research has allowed me to figure out some of the possible causes of my problems — research which no doctor will ever bother to do, because doctors are lazy and don’t care to do research.)

        I also took the recommendation for ibuprofen once — never again. Turns out I have an adverse reaction to it.

        Perhaps the reason your patients are disappointed is that you’re a jerk who is ignoring their symptoms? Consider the possibility.

        I’m not in favor of “do everything possible” or “do as little as possible”. I’m in favor of “do your goddamn research and pay serious attention”. This is almost unheard of among M.D.s.

  • Swirish

    As someone who is both in medicine and has been eating like a “hippie” for years before it has become more main stream, I am elated to see that more people are willing to try diet as a source of cure. Big Pharma is not the answer to everything wrong with a patient.

    NPR recently did a piece on why vegans feel “superior”. I found it a little offensive that non-vegans feel as though my diet choices are sometimes a threat or as if I am trying to apostheosize the vegan choice to them. Look, I eat this way because I think it is the healthiest way to eat. I think American western diet is more the cause of illness than the medical establishment recognizes.

    I think this young woman definitely made the right choice, and I think she might greatly benefit from eliminating all pesticides and most animal products from her diet as well.

  • http://www.facebook.com/laleshia.angels3 LaLeshia Lasky

    Amazing article! Thank you for your honest open and very insightful views! I completely agree and have informed my neuro that I will no longer be taking copaxone or any other medication he is tring to prescribe! I tried it their way for close to five years and still had relapses, I’m doing it my way now! I stopped talking my injections four months ago and haver been seeing a chinese herbalist; feeling Amazing with an MRI to prove no further progression!! I was actually able to ride my bike for five miles the first month I started the herbal tea…something I haven’t done in 10+ years!!! Just dont follow blindly, there are Always other options~ wishing you and yours the wisdom to choose what is Right for you, Best of Luck out there!!!

  • BeckB

    Thank you for this article, I think far too often we almost feel that if we don’t “Do as we are told” and accept the advice of our medical teams then we cannot go back to them later. I refused DMD’s purely because I was 27, read and did not like the idea of the side affects of DMD’s and wanted to have a family. Now 5 years on, I have 3 gorgeous boys and while I have had recent physio and a splint for my legs and I take meds for Neuropathic pain, I would not have changed it for the world. I take each day as it comes and while I do not rule out ever taking DMD’s; for now, I am quite happy with my decision and I always have the option to take meds when I feel I need and/or want to.

  • Catherine

    Thank you! When I was first diagnosed, it scared me to go on meds. I felt that if I didn’t do the drugs, they would not be there for me, and that scared me more! Probably because of not knowing what to expect. Dr’s need to be a little more understanding, and realize that we are patients not people with medical knowledge. I try and be proactive with my medical care, but it’s hard.

  • http://www.facebook.com/kellye.cooper1 Kellye Cooper

    Thank you so much for this!! I am one of those non-compliant MS patients since I refuse the drugs after two of them did more harm than good. Diet and exercise is the way for me now and two years ago I had angioplasty for CCSVI. Best treatment ever for my symptoms. I am lucky to have a good GP that listens but about to fire my fourth neuro

    • Shirley Renshaw

      Agree Kellye! I am so glad many are now speaking up and out! It has been a silent world and thanks to the INTERNET we now see what we all have been dealing with. Transparency and accountability is needed now.

  • WHWood

    Thank You! While I continually battle my MS and wonder what route to take I admire you to stand up for what you know is right for you, despite it going against what you have been trained to do. Fix the problem with meds! I am now on my third medication and battle with should I or should I not. I too took myself off the med you recently stopped. That medication reaped havoc in my life. I spent most weekends in bed, some with temps as high as 103 degrees and my body aching so bad I could barely lift a finger. I stopped in time to salvage what was left of my marriage. I stopped in time to rebuild the relationships that were struggling with my four children and I rezsigned from my job because I just couldn’t do it anymore. MS and that weekly injection almost took me completely out of the life I have. While I am now taking a nightly pill and side effects are minimal we really don’t know what it is doing. We do know that it is destroying my immune system and we do know that it is compromising my health in other aspects outside of MS. So hard to know if the medis truly helping or if this is simply the path of my disease? Hate the monster, but dislike even more the “medical game” we must participate in. Wish I realy knew what meds can be removed from my regimen. Would love to hear your story and what you find helps best for the different symptons that arrise. Thank You for sharing your battle to stand strong to what you knoe in the core of your being what is best for you. Good Luck on your Dventure. Prayers for you,

  • Guest

    what you write: “None of them have talked to me about other ways to manage my disease — diet, exercise, stress reduction, acupuncture, massage. None of them has ever said that taking no medication is an option, that I might be totally fine without pharmaceuticals; that none of us really know or that my feelings are important,” describes a lot of medical situations. I understand your exploration of how you feel about your behavior but I also think sometimes patients need to own their health prospects and find another doctor. the power relationship is severely unbalanced in modern medicine, you are seeing that as an insider and they probably don’t say anything bc you are a doctor. for mere mortals, it is quite different. I have a fibroid. for three years i slowly bled out bc i kept telling the doc something wasn’t right and she kept saying “it’s your age”. i was finally tested, etc and then told to try hormones (which i have never taken) to control the bleeding (or not, a lot of back and forth on whether it was the cause) but they made me sick and twice i discontinued. first, a nurse yelled at me for going off. the 2nd time, there was no follow up. so I found a new doctor. incidentally, this doctor prescribed a drug that actually controls bleeding, but in the US it is relatively “new” although Canadian and European women have been using it. maybe the answer is no meds, maybe there are other options. i wish you the best

    • Missmary

      When I was in my 30′s (I’m 70 now), I came down with an acute, severe flu-like viral infection that lasted for 10 days. A few weeks after I recovered from the virus, I began to have loss of feeling in my hands and feet, losing balance, vision disturbances. I was a single mother of 4 children, working fulltime, working on a masters degree in Philosophy, and coaching gymnastics at night. The pediatrician that cared for my children urged me to see a neurologist, which I did. He diagnosed me with “non-specific autoimmune disorder”, and prescribed prednisone. As problematic my symptoms were, the various medications were incapacitating. After almost I year, I asked my doctor if he thought I would be irresponsible to stop all medication. I told him that I could live with the neurological symptoms, but not with the side effects of the drugs. I could provide for and care for my children, continue to work and finish school – in spite of the fact that I definitely didn’t feel great. My neurologist told me that he supported my decision, and that perhaps at some time in the future I might make a different decision. A few months later, I developed severe psoriasis on my legs and arms that was quite disfiguring. Still, I felt better than I did on steroid medication. I just wore long sleeves and black tights for a decade. I finished my degree with honors, continued coaching gymnastics, and worked full time until a year ago. I will turn 70 next month. Over the years, my neurological symptoms have flared, parasthesias have remained – but I made up my mind 35 years ago that I would never say “I feel bad.” Instead, I would say “I feel different, but I can still do all the things I need and want to do.” Eventually, those symptoms became my “normal.”

      Recently I went to a new doctor because of developing arthritis in my hands. She looked at my almost 40 year history, and said “You HAVE TO go back on prednisone!” I told her that I appreciated her concern, but the fact is I DON’T have to go on steroid therapy, and I have proven that fact over the last 40 years. I own my own body, and my own life. Perhaps not accepting the prescribed therapy was taking a risk, but it was my decision, given my reality, and my life view. It was not heroic. It was a carefully considered decision, and I had the joy of being productive, and raising four happy, educated, successful children. I wouldn’t have had it any other way. One woman’s cure can be another’s poison, when you look at the totality of a life. Every person has a right to make choices. I’ve had a good life -in my case, much better than being incapacitated by a devastating treatment.

      • neroden

        You may want to consider different medications. First of all, you have the symptoms of Lyme disease — has anyone ever tested you for that or treated you for it? Chronic Epstein-Barr is also a possibility, athough unfortunately it’s incurable at this time.

        Second, if it is an autoimmune disease, local steroid or immune suppressant injections — or even lotions — can help a lot with specific area problems, without the same side effects as oral steroids. Because doctors are often very aggressive about treatment, they may never have offered you that option.

  • cb

    The treatment of the patient as a whole is key, and unfortunately the western model still insists on treating the disease and not the person. Lifestyle – diet, exercise, stress reduction, detox via exercise and massage, social connections and support are key to aiding the body’s own ability to handle disease. Integrated therapies can contribute positively both to the progression of many diseases, as well as the ability of the individual to maintain a positive outlook.

  • Wick Sloane

    Dr. Brewster, thank you for another brilliant piece reminding us of the complexity of the medical system. I wish more doctors had your experience, though, of course, not with such a difficult disease. Good for you for learning something for the rest of us from your ordeal. I agree with other commentors here that being in charge is something we, the patients, don’t quite believe we can do. We’ll send our doctors now to your reports and essays.

    Wick Sloane

  • Maureen B.

    Glad I took the time to read this. Physicians and patients should partner in care decisions, and patients should listen to their “inner voice” – it is often right on. Instead of noncompliant, I prefer “patient declined recommendation of…” This wording is factual and in my opinion less negative. Thanks for sharing.

    • shoshi

      i’m with you completely

  • Kim W.

    Thank you for this article. I have RA and have been on injections for the past 10 years (reluctantly). I have been interested in diet as my medication for years andd no docttor supported this decision until recently. This was always hard for me – following the doctors orders but really not wanting to – being the “non-compliant” patient. So, one year after reading the book The China Study by T. Colin Campbell, I significantly changed my eating habits to a whole foods, plant based diet and have been off of my medication for 3 months now. I am occassionnally stiff in the morning but otherwise I feel fantastic and I don’t have to rely on a tri-weekly injection. It is really amazing what a shift in habits will do for your health.

    • neroden

      Most autoimmune diseases are now known (by scientists — but not by doctors, who pay no attention to scientific studies) to be triggered by allergies, infections, and similar “legit” immune responses. Eliminating the triggers can often eliminate the autoimmune response, or at least reduce it massively. This is even though there’s also evidence that genetics predispose people to autoimmune responses. Staying away from anything you’re allergic to has massive benefits — the immune system often “goes back to sleep”, so to speak. This has been documented repeatedly.

      For some reason this *fact* has not gotten into medical practice, maybe because the training of doctors is completely and utterly worthless and broken.

  • Marie

    Fabulous write-up – thank you. Also, in one of your paragraphs, you noted…”It is particularly satisfying when patients do what I say, get better…” It occurred to me that, as a patient, it is important to consider the flip side: What if the you do what the doctor says, against your own intuition, but then don’t get better? The doctor feels like they did all they could, and can continue living his/her life with that knowledge, but as a patient, you (or anyone) would continue to live, not just with the illness, but also disappointed for did not trying all you or they felt they could. I applaud you for considering all this, and thank you so much for sharing it. Also wish you ALL the best, always.

    • neroden

      “What if you do what the doctor says, against your own intuition, but then don’t get better?”

      And what if you do what the doctor says, against your own intuition, get worse,… and then do your own research, self-diagnose *correctly*, self-treat *correctly*, get better, and come back and tell the doctor that they were wrong?

      Some doctors have the common sense to admit their own errors and learn from such an experience. Most doctors, however, are arrogant jackasses who refuse to listen even when they are told outright that they were wrong and the patient was right.

  • http://www.facebook.com/UnfoldingStoryPictures Zee Zarbock
  • momat32

    Thank you for such a beautiful, honest and yearning post. Do you know about another doctor who blogs about her MS, Terry Wahls? She has had a lot of success with changing her diet: http://www.terrywahls.com/

  • Lisa

    “Moreover, doctors like clarity. We prefer to do something instead of nothing, and this often means prescribing medications.” — I wish this was the case. In my experience it is not. Multiple doctors did not want to clarify why I was having chronic diarrhea and fatigue 10 years ago. I had to figure out my and my son’s celiac disease myself and then insist on tests for it 7 years later. We are both now diagnosed. My gastro-ent had to clip my intestine after the removal of a polyp. Besides the microperforation I ended up with, there was no follow up – no “clarity” that it passed as it should have. I very painfully passed the clip finally after 2 years after an MRI loosened it. My obgyn told me not to worry about a little lump in my breast last year. It got bigger and bigger and I went to a different doctor and it was breast cancer. Too many doctors seem to think that if you are still up and walking around, you’re just fine and there’s nothing to look for. “Clarity” my scrawny white behind… Maybe if you can afford it, you can get clarity. Many of us do not get “clarity” from the doctors except for obvious emergencies.

    • neroden

      Doctors don’t pay attention to patients, they don’t pay attention to symptoms, they don’t test, and they don’t do research. That’s the problem.

  • Cat

    It’s great to hear a doctor express this. I have trouble finding an optometrist or ophthalmologist who will similarly let me make my own judgements on the benefits of glasses vs contacts. It’s infuriating to simply be told the conclusion with no regard for my quality of life. Obviously, a much smaller concern that MS, but it is another indicator that medicine in general suffers from this issue.

    • Barbara Reiss, OD, FAAO

      Cat, i’m an optometrist and I don’t understand why this is an issue for you. Why can’t you do either or both? There are lots of different ways to wear both glasses and contact lenses.

  • Ned

    Another must read for patients and doctors alike. Thank you for this brilliant illustration of the importance of context. It matters so much. And is often overlooked by all.

  • Lee

    for what it is worth the NHS in the UK has considered restricting reimbursement of commonly used therapies for MS becasue the data does not necessarily support the claims made by the manufacturers. Plus, the endpoint used by the manufacturers to “prove” disease modification (e.g. less brain lesions and slower growth of brain lesions on MRI) are not necessarily proven to be clnically meaningul. Not to mention the price point for these drugs is upwards of $40k per year