"Flare Up" at 6 months post GBS diagnosis

    • April 15, 2017 at 2:31 pm

      I was admitted on October 6, 2016 with advanced GBS. I spent 4 weeks in ICU on a ventilator receiving IVIG during that time and then an additional 4 weeks in rehabilitation hospitals before returning home for outpatient therapy. The 6th of April was 6 months since I was admitted. About 4 days ago (April 11) I started to struggle with tingling in my feet again. It has since spread up to my knees and is in my hands. My lower legs are very weak and I am struggling to continue as “normal”. I recovered quite quickly, went back to work at 5 months post initial diagnosis, for how severe my case was and I’m wondering if anyone had pushed it too hard and had a flare up such as this? I have been sick with a fever too on and off for the last 2 weeks so I didn’t know if this was a response to that? Just looking to see if anyone else had similar experience. Thank you for your help.

    • April 15, 2017 at 4:19 pm

      Recurrent Guillain Barré Syndrome (RGBS) is a rare entity that has been reported in about 1–6% of all patients with GBS. Some prominent neurologists believe that if symptoms reoccur after a year it is likely CIDP.

      With almost all autoimmune diseases, our systems have learned how to make antibodies that can attack “self”. Sometimes what triggers this can be an infection such as the flu, or a flu shot, or something else our system sees as needing specialized antibody intervention. People on this forum have reported a myriad of triggering events for them. Usually the bad antibodies attack the myelin sheath, in rare instances the axons.

      Corticosteroids will slow our immune system response and reduce inflammation (from myelin assault). This can help reduce our susceptibility to future episodes of RGBS/CIDP. However, this group of medicines (including Prednisone) can have many bad side affects for some of us if taken long-term.

      Finding the best treatments for each of us often requires some trial and error because none react exactly the same to the same treatments. I highly recommend treatment at a center of excellence or by a neurologist well experienced treating peripheral neuropathies.

      I hope you can fully recover from this awful disease, which might take 2-3 years under the best treatment conditions.

    • April 27, 2017 at 8:04 pm

      Hi there. Sorry to hear about your flare up. I am still trying to figure out if I have GBS or CIDP. It was initially CIDP because it took about 10 weeks for the major symptoms to run through my body. Muscle spasms, tingling, twitching everywhere from my toes to my tongue. I was never in the hospital (although went to the ER twice) and only lost the use of my arms for about 2 weeks, not my legs. My arms were not totally paralyzed, more like 80 % paralyzed. EMG/NCS showed demyelination. But my LP in January was normal, so my neurologist switched it to GBS. If someone would have asked me 10 days ago how I was, I would have said I was on the road to recovery. But last weekend I mowed the lawn and did a bunch of yard work. My allergies must have acted up bc my eyes were totally swollen the next morning and then the twitching started in my calves/feet and my hands were so weak and hurt. It’s been 5 days and I’ve tried to take it easy, but it’s hard with two little kids and life. I do find that the more active I am, the more my twitching acts up. I think that our nerves are just so damaged and maybe our bodies still attack them sometimes (maybe for you your fever, me my allergies?). IDK, my neurologist has never really explained too much to me, I learn more form reading forums and posts by people who have gone through this. So I appreciate yours and wanted to let you know I think we’re in the same boat. Lots of rest and taking it easy seems to be best for me right now. Stay positive, my friend!