Reply To: Doctors in Seattle

March 6, 2013 at 2:53 pm

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Assuming the disease is no longer active, recovery is a matter of nerve healing.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.