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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Has anyone gone to Dr. Shur at Brigham & Women's Boston?

Discussion in 'ME/CFS Doctors' started by wciarci, Feb 18, 2010.

  1. IntuneJune

    IntuneJune Senior Member

    NorthEastern USA
    Boston ....

    For one thing, we are taking our lives in our hands and hands of so many others driving on the South East Expressway to get there.

    I seem to be in limbo as far as many of my doctors and insurance goes.

    My PCP retired. Am trying out a new one and I KNEW it was going to be hard, had been going to the former for 20 years, it was a very comfortable, mutually respected relationship. So I am on thin ice with the new guy.

    My rheumatologist, whom I only went to every other year for a "check-in" to keep tabs with her in case something really new came along, she stopped seeing CFS/FMS patients. Funny thing is, I found out this fact --- when it happened a few years ago--- from a poster on PH!!! I was due for my "check-in", got my appointment OK, and when I brought up this fact, she replied, "that is true, I will diagnose a patient on referral but then refer them again to other doctors who are treating." Why.... "Because there is nothing I can do for these patients to really help them."

    My GI doctor missed the diagnosis of celiac disease....do I really want to keep him???? There were a few other problems with him also.

    My allergist is good. Quirky, yes, OMG he is quirky. And he does yucky procedure of putting a scope up my nose and down my throat, to check things out (I have a hypergag reflex so the small mirror in the back of the throat does not work.) Talk about feeling violated. It's awful, I am a little better about it over the years but the first time he tried this, I was certainly on the defensive and to gain a little control while being "attacked" (maybe overstated but that is how I felt----incoming) I grabbed the knot of his tie at collar level and I was prepared to twist and/or push. We both were talking in elevated voices...not shouting....but loud. When that appointment was over, and we both looked a little worse for wear, he did leave the examing room with a slight smile. Anyway that was years and years ago. He has had to do that on a few other occasions. He gets already with his weapons.....I mean equipment.....approaches the chair and says "Be good." He is at retirement age now.

    Now the pulmonologist who diagnosed my immune deficiency is brilliant, I had been misdiagnosed with another ailment, the diagnosis did not settle with him, he investigated, ordered more tests, and found the immune deficiency. Treatment takes a lot of paper work, but he does not have the support of a good office staff, and of course, he is the only one who should take responsibility for this. My treatments for the infusions have been interrupted twice, paper work needed to be done, it was not getting done.

    At this time I had an appointment to be evaluated in Boston by an immunologist who was going to coordinate the care of the pulmonologist and allergist. This was my first time going out of state for care. He is wonderful. He takes all the time I need to ask questions, and he is a fighter as far as the insurance companies go. He is at Beth Israel Hospital. So I am jumping in here to say, I made out alright in Boston. And now take another route to get there. Usually after the visit, if my husband drives me, we go to Back Bay Boston for a visit.

  2. JT1024

    JT1024 Senior Member

    I'm jumping into this thread with a quick question.... Who is your doctor at Beth Israel?

    I live in Massachusetts and can't agree more that good doctors for CFS/FM are hard to find. With so many doctors in eastern Mass, you would think that would not be the case.

    Recently, I started to see a Dr. Alex Bingham in Wellesley, MA. He was very attentive and took plenty of time listening and asking questions. I mentioned the B12/methylation stuff that I learned from PR and he knew about it. He also has had contact with Rich VanK which is reassuring. Time will tell how things go!
  3. IntuneJune

    IntuneJune Senior Member

    NorthEastern USA
    Beth Israel Hospital - physicians in Boston

    JT1024 I am seeing an immunologist at Beth Israel, he is treating me for a primary immune deficiency -- not CFS/ME.

    This is a very different diagnosis, worked up by lab work. Wouldn't it be wonderful if CSF/ME could be that simple.

    I was diagnosed locally in Rhode Island, but we have no immunologists treating primary immune deficiencies in Rhode Island.

    It sounds as though you have a good catch with your doctor. I have never come across a doctor who was familiar with Rich or any prominent physicians in the field.

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