Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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MGH or Brigham & Women's Experience?

Discussion in 'ME/CFS Doctors' started by David_101, Sep 14, 2018 at 6:05 AM.

  1. David_101

    David_101

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    Having been through a really bad experience at Tufts, I'm officially going to switch my provider care over to MGH or Brigham's in Boston.

    I suspect that I have autonomic dysfunction and autoimmune issues (both seem to be related). I have higher ANA (an autoimmune test that showed 1:160) which my doctors are not investigating.

    Does anybody have any experience with either hospitals?

    Specifically for neurologists and rhumotologists.
     
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  2. Learner1

    Learner1 Forum Support Assistant

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    David_101, Judee and alkt like this.
  3. RebeccaRe

    RebeccaRe Moose Enthusiast

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    I'm interested to see what people say, too! Would you consider someone at Beth Israel as well? Or do you need to stay within the Partners system? I think that your experience will depend more on who the doctor is rather than the hospital.

    The Mass ME/CFS and FM society does provide physician referrals based on patient feedback--have you contacted them?

    I see Dr. Systrom (a pulmonologist) at the Brigham, and I think that he is a good doctor. But I do not currently have a rheumatologist following my condition in addition to him, and I wish I did. I had previously seen Dr. Bermas, also at the Brigham, but she is (thankfully) no longer there--she didn't have much sympathy, discounted my abnormal test results, and pushed me to exercise far beyond my limits. She had been the director of the Arthritis Center (where they see all rheumatological patients), which makes me wonder if other clinicians there had similar views.
     
  4. minimus

    minimus

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    I am scheduled to see Systrom in mid-October for an initial consult, will be travelling from NYC. Am on the verge of disability and a more severe case of ME, after 20 years between moderate and mild.

    Is he helpful? I am interested in the invasive CPET he runs, but am curious if he runs that test on everyone with exercise intolerance. Also, is he helpful or more focused on whether the patient is a good candidate for mestinon?
     
  5. RebeccaRe

    RebeccaRe Moose Enthusiast

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    I don't know if he runs it on everyone. However, I imagine he suggests it to most people with our profile (as opposed to people who present with obvious heart and lung issues unrelated to CFS). Right before you see him, they'll do a quick breathing test and an exercise test (just stepping up and down off a stool for a minute or two) so he has some data on which to base the decision to suggest an iCPET.

    Both, to be honest. He's a pulmonologist who has found a way to treat some of the symptoms of CFS that seems to work for a lot of his patients, so that is his focus. Mestinon seems to be his go-to drug of choice. If the Mestinon doesn't work (which happened with me--it actually made me feel worse), there are a few other medications and treatments he can recommend (which have made me feel better). However, he's not a rheumatologist and so his interest and expertise is not in figuring out the underlying autoimmune issues. He just treats the symptoms, and he does so using the drug he has found tends to work for his patients.

    All in all, I think it is helpful to see him. He's very kind, and the tests he run could give you some interesting data about how your body is functioning. And the drugs he prescribes may be helpful. Although the results haven't been dramatic for me--I'm not running marathons or working full time--my energy level and level of functioning has improved a few notches, which has made a huge difference in my quality of life. However, keep in mind that he's not a rheumatologist who would manage your case or try to figure out what's going on with your immune system.


    P.S. I just have to ask, @minimus --have you named yourself after the mouse??
    upload_2018-9-15_9-10-30.jpeg
     
  6. David_101

    David_101

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    @Learner1 I appreciate the links. Is the cell trend only ruling out POTS or other types of autonomic dysfunctions. At this point it's hard to say what I have. I have irregular racing heart/higher blood pressure which is like the opposite of classic POTS. Though I do get lightheaded when I change positions, I don't faint.

    @RebeccaRe I would consider Beth Israel as well if there are good doctors who understand and don't label this as something in your head. Thanks for the Mass ME/CFS link. It's a shame to hear about bad the rhuemotologist you had at Brigham. I hope that doesn't include the whole dept.

    @minimus I'm sorry to hear about your ME situation. 20 years is tough. I really hope Dr. Systrom can provide meaningful help or is at least sympathetic. This whole ordeal has changed my perspective on doctors.
     
    Last edited: Sep 15, 2018 at 11:28 AM
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  7. Learner1

    Learner1 Forum Support Assistant

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    @David_1 I have some of those antibodies, with a racing pulse and high BP.
     
  8. minimus

    minimus

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    Thanks @RebeccaRe for your really helpful, informative reply and @David_101 for your sympathy.

    Two decades of this dreadful illness has been rough physically and emotionallly. But on the bright side, I can't remember what it's like to be healthy anymore, whereas in the first 5 or so years of illness, I really yearned and mourned for my old, healthy self.

    @RebeccaRe, I chose the username "minimus" because my boss used to jokingly refer to me as "Maximus" because of an optimization program I developed before I got sick. Somehow "minimus" seemed more fitting after I got sick.

    Your description of Systrom makes me a lot more hopeful about seeing him. I have seen quite a few ME/CFS specialists - Cheney, Levine, one of Klimas' nurse pracitioners. They are good at diagnosis, validation, and chronicling the ups/downs of the disease, but none have given me any faith that ME/CFS can be effectively treated. At this point, I would settle for just a little bit of improvement -- to feel like an 80 year old instead of a 90 year old, I guess. Sounds like Systrom might be able to do that, fingers crossed.
     

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