I fully understand the frustration working with the government. I never knew they’d take benefits away just because you came into some money. I’m sure it would be VERY difficult trying to get independent insurance having had GBS. I got disability on my first try but I had many other problems besides GBS but a very good friend applied for disability with chronic pain and other problems and was turned down twice. She finally decided to get an attorney and go to court. She won her case and was granted disability. She contacted a lawyer she saw on TV. She said his commercial had the least amount of screaming! 😀 At least go for a consultation – they may be able to tell you if you stand a chance of winning.
I think I would see my regular doctor and have them fax a referral over to an MDA/ALS Clinic. Just by my own experiences of having bad nerve damage ad attacks on my nervous system, the Neurologist in my areas don’t have the proper testing or facilities in my area. Anything to do with normal stuff they do okay with, but rare disorders may require an MDA Specialist. Should be an area in that state that has a specialist. Just got my referral in today at Duke! Hope they can find out what is going on and get you treated soon! Welcome Trish!