Before I was diagnosed with GBS I went to 3 different primary care physicians and 1 urgent care center who all said it was a pinched nerve and injected me with muscle relaxants. After I could barely walk, I dragged myself to the ER and immediately received a diagnosis after a spinal tap. I wish they would have diagnosed me sooner, and I have a lot of anger just like you. But really, I don’t think there’s anything I can do. And to think that this same situation happens to tons of people on a daily basis it’s so sad.

Hi, I had GBS in 2017 and I feel every time I get sick and/or stressed, I get residuals. For example, I’ll feel tingly in my feet for a day or 2, or my hands. Sometimes it’s parts of my face, etc. Sometimes I feel tingly/numb in areas where I have not felt that before and it is really random. As far as heaviness in the legs, yes I have felt that too when I’m sick or right after. Muscle twitching not so often but I do get it in my biceps and calves and it is very annoying but doesn’t last long. What I do to keep calm when I get these symptoms is to prove to myself that I don’t have weakness, so I do some squats, planks, walk up stairs, and sort of take a baseline and make sure I’m able to do the same amount each day, it assures me there’s no increasing weakness.

My neurologist said if it is not persistent, not to worry about it. The thing is, after having had GBS is nearly impossible not to “worry”.

But yes, flare ups for me and very common and scary, I think they always will be.