Reply To: Undiagnosed Adult GBS, mild case?

July 26, 2017 at 12:28 pm

You have what I have.
But I don’t know what that is yet!

OK I don’t know that we have the same thing, but I’ve read probably hundreds of neuorology posts on different forums and your symptoms are the closest to mine that I have seen. Only thing I never had was facial paralysis. Here’s my thread on Neruotalk witch is an excellent forum:
https://www.neurotalk.org/peripheral-neuropathy/248274-urgency-diagnosis-treatment-quickly-nerve-damage-occur.html
Or go to neurotalk and search forum for ‘urgency or diagnosis treatment’

I’m 3 months into this. My forum post isn’t up to date because I have seen a Neurologist but I’m waiting to post again until I get some answers. I got the blood tests back and one of the tests for a disabling auto-immune disease came back positive. I was too freaked out to research it or call the Doc about it. Then 4 days later her office calls me and says it was likely a false positive. W-T-F! It’s a really difficult roller-coaster ride trying to deal with this.

Only advice I can give at this point is stay positive because it all could turn out just fine. I got negative 2 weeks ago waiting for my neurology appt. My brain absolutly got stuck in the dark dark loop and I was miserable 24-7 for the worst week I’ve had in the last 10 years or so. Now I’m feeling better even though I have no more information about my illness. I do have another MRI Monday and a visual evoked potential test Monday.

Lets stay in touch: whoever gets some answers first let the other person know.