Keep trying :-)
I know the whole process is quite annoying,stressful and very exhausting, just keep trying. It took me 3 times, the third time I went with a lawyer. I was glad to get the referral from Social Services in my area. I didn’t have to pay anything and having a lawyer can really speed up the process.
What state are you from? I know it can be different from state to state the laws and all that. No matter what don’t give up you will get the help you need. Once you get the lawyer, it’s important to have your neurologist and Primary doctors write letters, if you see any other specialists they too can write and even your Physical therapist.
It’s also very important to document everything on paper, dates, what happened, what you have been going through since the onset of the GBS to the very present. The times and dates of doctors you’ve seen.
It’s a real fight just to get the help you, the main problem is that SSI doesn’t have much information on GBS/CIDP, they don’t quite understand it all and the process of our recovery especially since no one has the exact same problems each of us are different and it makes it more complicated for them to make the correct decision just hang in there, stay strong and don’t take no for an answer!
Sure hope this has helped you and anyone else who is going through this process. Good Luck to you all!