Doctors in Seattle

When antidepressants are offerred to a patient, they are not intended as a solution to GBS, but as a treatment for depression. I was offerred antidepressants too, but I refused them. You don’t have to take anything you don’t want to.

Are you saying that you had no treatment at all for GBS? No IvIg? That would be the usual thing. But since you are three years out, and GBS peaks in eight weeks or less, presumably you have been recovering to some extent since then. Is that correct? 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.

Seattle is large enough that there ought to be several neurologists there with good experience with GBS. 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.

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?

No, I am not a doctor. I am merely someone who had an extreme case of CIDP, which is similar to GBS. My case was atypical, and more resembled GBS in its early presentation. I had considerable dealings with doctors, nurses, therapists, and technicians of various kinds during my illness and recovery.

Assuming the disease is no longer active, recovery is a matter of nerve healing. There is no treatment for damaged nerves, although vitamin B12 is said by some to promote nerve healing. I take it, but make no claims for it.

Physical therapy rebuilds strength and coordination in muscles that have become re-enervated, but does not cause nerve healing itself. So if you are not seeing a PT, then it’s just a matter of exercising what needs work. A therapist should be more systematic about working different muscle groups with appropriate exercises, which a person on their own might not know how to do.

Many therapists do not understand GBS because they work mostly with sports injuries, which are far more common than GBS. Even neurologists may have little experience with it, although any neurologist should know something about it. There’s nothing a neurologist can do to heal nerves, however. I see my neurologist only every six months now, and all he does is check my strength to make sure I am not relapsing. He also prescribes medication, and checks my blood test for side effects, but this is for CI! Not GBS.

Recently diagnosed with CIDP and was lucky to be admitted to Swedish Cherry Hill Intensive Rehab in Seattle.  In a little over a month and a half I was mobile in both a wheelchair & walker at Swedish.  The PT/OT works and is WORK.  But then I had a relapse which I am now trying to work out of again.  But the point for the original poster, i.e., a Doctor, I’ll point to 3 of mine at Swedish, Dr Kushner (my admitter), Dr Shelly/Shelia Smith, and a musculer/skeleton specialist Dr Lee Lou (probably mis-spelled last name).

For those with CIDP who have sufficient financial resources and/or insurance coverages (non Medicare) and are brave enough to undergo a Stem Cell transplant in Seattle, check out this Clinical trial: http://www.fhcrc.org/en/treatment/clinical-trials/detail.7303.html

I am considering it for myself since I was disqualified from the Chicago SCT program due to age. I am waiting for the new Medicare provision that kicks in on 1/1/14. The “wording” should be available in a couple months so we can see what is covered and what is not. This new Medicare provision specifically expands participation in Clinical Trials. Details are here for those interested: http://www.cms.gov/CCIIO/Resources/Fact-Sheets-and-FAQs/aca_implementation_faqs15.html

JimT