Reply To: "Flare Up" at 6 months post GBS diagnosis

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!