What kind of doctor?

    • Anonymous
      June 4, 2007 at 8:55 am

      What kind of doctor deals with the immune system?
      Is that an immunologist, an endocrinologist, an immunopathologist
      or still something else?
      How do I find one?

      Thanks for any suggestions

    • Anonymous
      June 4, 2007 at 9:10 am

      I’ve been seen by an Infectious Disease Specialist, along with many neurologists.

    • Anonymous
      June 4, 2007 at 10:24 am

      Well, yes, so was I, when I first got in the hospital. Infectious disease
      saw me several times in the suburban hospital where I first went
      (Passavant – Pittsburgh) and decided it wasn’t an infectious disease.
      Then I was transferred to a teaching hospital (UPMC Montefiore) where
      the whole neurology department was in my room at least twice.

      Well, I want to stop complaining about the medical profession and try to
      get some help, so I suppose it might benefit to rephrase the question and
      ask, “Where do I go next?” Unfortunately, over the last two years I
      have learned to be suspicious.

      I’ve been referred to another neurologist, Dr. Shymansky. He seems to have a good reputation and I’ve seen him once. He took some history (not all) and
      had an EMG done in his office. Didn’t discuss it with me. What I know is
      what I got in casual conversation with the EMG technician and he
      seemed to be pleased with what he saw. There is apparently more nerve
      function remaining (or possibly returning) than they see in many peripheral
      neuropathy patients. Also I had some “bizarre repetitive discharge” and
      they got all excited about that but didn’t tell me what it means or if it is
      good or bad.

      Bottom line so far – Dr. Shymansky says I have CIDP and wants to do
      another round of IVIG. He says I probably have “a continuing subclinical
      immune battle going on”. But how would he know? Is there a way of telling
      or is it just an assumption from the fact that the neuropathy has lasted
      almost two years. And then again, the neuropathy is NOT progressive.
      It is extremely painful but it HAS been getting better albeit slowly though
      now I’m hearing about the “two-year” window.

      So that’s why I’m asking about a doctor for the immune system, whatever
      that is. Is it even defined? Are there doctors who take patients.

      I’m also concerned about the IVIG from another point of view (among many)
      and that is that when I had it in the hospital about the second week
      after onset, I had no impression that it did any good. It didn’t decrease
      the pain any, the condition progressed more in about the 5th to 8th or 9th
      weeks and I had a neuro (at that time) who said “That’s OK, be happy.”

      I just think that under the circumstances I should have a second opinion
      and want to know where to go for that. I’d like it to be someone who will
      either evaluate the “continuing subclinical immune battle” idea or tell
      me point blank that such an evaluation is impossible. Am I being
      unreasonable? And no, that is not a rhetorical question. If what I am
      looking for is beyond reasonable expectation, hit me with it.

    • Anonymous
      June 4, 2007 at 11:00 am

      if you really want to find out what’s going, go to the mayo. they’ll get the Dx & explain it to you. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 4, 2007 at 8:24 pm

      I have a friend with Rheumatism which is also an autoimmune disease (which I believe GBS and CIDP are) and she sees an immunologist – but we are in Australia so maybe things are different ??

      I know how you feel about being untrusting – I have had more answers from the internet eg: this forum – than any other doctor.

    • Anonymous
      June 5, 2007 at 4:07 am

      Cwavec, I quite understand your concerns. Many disorders are based on a probable auto-immune dysfunction. Each speciality will have its own batch of autoimmune diseases, in neurology these include GBS and CIDP both of which are thought proably to have an autoimmune basis and neurologists are the specialists for this.
      The major area of immunology includes oncology with the interest in leukaemias, lymphomas and myeloma. The other more prevelant disorder for immunologists is of course the acquired immune deficiency syndrome or AIDS.
      Best wishes DocDavid