residuals for over 19 years constantly. Left leg is getting worse

    • July 1, 2019 at 12:41 am

      contracted GBS in 2000 and never stopped having residuals.
      About 3 years ago my left leg started to have more and more pain, feeling swollen, 3/4 numb and very sensitive (like wearing a sox on it with crawling bugs feeling, and now I am limping because it is getting stiff and hard to walk with my canes. The Nero doctor is no help. Now my pain doctor needs to take away my pain meds,(because of the government) which is the only way that I can walk or get out of bed.This is too much–What can I do? What is happening? All I ever hear is that only 5% have these problems, the rest of people are perfectly OK. I will be OK and no help given. Judy

    • July 1, 2019 at 1:28 pm

      What treatments have you had? IVIg, Plasma Exchange (PE), and corticosteroids (Prednisone, etc.) are the typical treatments. Some people do not respond to all treatments… I never responded to IVIg, but PE, Prednisone, and Rituximab worked for me.

    • July 11, 2019 at 2:00 pm

      Have had gbs for past 7 months. I got off of oxycodone via Kratom and lyrica. Kratom was a god send for my pain. I take 150 mil. of lyrica daily and 6 to 8 grams of kratom when needed. Shop around for the best kratom source. The pain was the worse part of this disease. Good luck.

    • August 22, 2019 at 1:55 pm

      Hi: I am 14 years post GBS and had extensive nerve damage which led to many residuals which have never left. Still need a wheelchair but I can walk for short periods pretty well. I have been able to get rid of almost all of my neuropathy using marijuana and alpha lipoic. Alpha lipoic has been wonderful in eliminating the neuropathy the pot did not. Now I almost never have neuropathy. I still have a lot of leg pain which pot helps with but I have to be very careful about how much I walk or do or the pain can get out of control. Before my pain specialist recommended pot I was on four kinds of pain meds and was a zombie most of the day. With pot I am not on any pain meds. So I would recommend alpha lipoic and pot. You pay a terrible price using opoids even though they work. I know pot is not for everyone but worth looking at. Good luck and, no, you are not alone. I know there are many of us dealing with residuals every day.