Reply To: Doctors in Seattle

March 6, 2013 at 5:23 am

First off, thanks for the response. Are you a doctor?
“When antidepressants are offerred to a patient, they are not intended as a solution to GBS, but as a treatment for depression.” “You don’t have to take anything you don’t want to.” – Yes of course. My point is that it wasn’t helpful for my GBS and that is what I’m looking for. I didn’t care for my Neurologist and he didn’t seem to be offering anything to actually help; This is why I was asking If there was someone that could be recommended as being of more help.
Are you saying that you had no treatment at all for GBS? No IvIg? “- No, I’m not saying that. I had the IvIg when initially admitted to the hospital, as well as some physical therapy until that ran out. My interest is now.
 “presumably you have been recovering to some extent since then. Is that correct?” – After the first year It’s remained pretty much the same for the most part. Sometimes better, sometimes worse. I’m able to walk, but not very far. Walking steps is hard. If I push myself at all I am toast the next day. If I try to pick up a pan my hand shakes.
Treatments for GBS are mostly given during the active phase, to lessen the effects of the disorder (IvIg or plasma exchange), and as support for ancillary problems (breathing difficulty and blood clots, for example). Once you are in the recovery phase, the main treatment is physical therapy. If you have nerve damage, there is nothing much to do besides wait for the nerves to heal to the extent they will.
 OK, well I’m still having trouble so… Are you saying that all I can do is physical therapy or wait at this point? There seems to be a bit of a disconnect here. The physical therapist I went to had no real understanding of GBS or the limitations I was under. They also didn’t have me do anything I couldn’t do on my own. There has to be something more I can do, and this is what I am looking for.
Seattle is large enough that there ought to be several neurologists there with good experience with GBS.” – OK, so I’m looking for someone who might be more informed on GBS specifically, or doctor that someone with GBS has had a positive experience with in Seattle.
It isn’t necessary to be at a Center of Excellence — I had excellent care (for CIDP) at a hospital which was not so rated, and had neurologists who were well versed in the disorder.” – I’m glad you had a successful recovery.
“As for working out, it is important to find the right level and not overdo it. Are you seeing a physical therapist or doing it on your own?”
On my own. Sorry If any of my answers come off as abrasive at all. I’m not much of a typist; this took me about an hour to type.