The biggest part of the battle is from the shoulders and up. I am ten years into this sometimes nightmare. Like me you didn’t ask for this And you absolutely do NOT deserve it!

I realize this is an old thread but hope it’s okay to respond to it. I had that lousy experience like you said especially when with others. If they could experience this demeaning treatment POSSIBLY they may act differently.
I very much appreciate your advice and references in response to questions on this forum! Btw.
Would it be possible to talk on the phone? I had GBS diagnosis ten years ago, at age 50 with limited recovery but have since been losing ability. Today neurologist revised diagnosis to CIDP.  You mentioned some of your treatments but seemed to indicate you would do some things differently. I use forearm crutches full time and wheelchair when any distance or standing more than minimal is needed.
Most anytime at your convenience would be greatly appreciated! Sincerely David Bartoo 903-452-9160 cell (call or text) or dnbbar2@etex.net poss message to set a time?

I have taken Lyrica for about four years now. I have had none of the stated side effects but got a fairly good effect only after I was raised to 600mg/day..Insurance did not want to pay at that dose. Pfizer is providing it through their patients assistance program. Take care Bar2

So much time has past possibly to much time. But a review of the case and treatment but a full expert with these illnesses is far past due! Please call Dr Kasim Sheik at UT Hospital in Houston. He is a neurologist that is recommended by the GBS Foundation his office number is (832)325-7447 for his Medical Assistant and (832)325-7080 he helped greatly!! I can go into more later But Please call right away!! It is a massive strain on all of you I truelly wish you the best David

For me my doctor advised that I take magnesium which helped with the spasms, buzzing, twitching and so on. Not totally but 50-75% better. Now I take ionic magnesium. I tried many muscle relaxer meds but since the GBS left me with many severe residual issues incl bowel and bladder All of the relaxer meds made it impossible to empty my bladder. Very frustrating. 800 plus milligrams was helpful just be aware that at first a large dose might cause diarrhea at first. But it can work for some. Take care

I was awarded SSDI on reconsideration. Which was only 10 months from my onset of GBS. In my case there is extensive axonal nerve damage and when I asked for my application for disability my neurologist had diagnosed that as a result of damage extending beyond the nerve coating to include the axons. She also detailed the damage to my bladder and bowel.And that the damage is permanent. As a result Social Security sent me for an independent exam by a doctor they selected. They approved me all the way back to onset. Then two years after onset they added Medicare. So yes you can succeed in getting disability But as was mentioned you may need time for your diagnosis and residuals to become clearer. But you can apply now so you have started the process since if you are ultimately approved you could be paid back to onset or the date you first applied. Be aware there is no slam dunk And if denied don’t dispair just go thru whatever you have to do. Esp if it becomes clear you will be unable to go back to work in a real and productive way. BTW I was 51 when approved. Take care DB

Shirley you have been dealing with this such a long time I know something else popping can be distressing I hope you have others around you to help keep your spirits up stay involved to the extent possible. Just a thought with the increase in knee and leg pain. Early on for me what helped me every bit as much as the meds was therapy. It may be that very gentle range of motion therapy could provide a measure of relief. Bear in mind though at first even if done very gently may possibly hurt even more but try to work through it and it may help. When in the hospital I looked forward to my wife and the therapist moving esp my legs it was helpful for me.Tho still my legs and just about every thing else hurts and limits activity and professional therapy is out of reach for me as I can’t work and have no insurance. I do hope you find relief and distraction from your pain and distress. Take care