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.