I applied and used an attorney. But I also had a good neurologist that new what I needed and that was the results from my nerve conduction test (EMG). At that time I did not have CIDP. I had a surgery on my neck that to take out a herniated disc that left me with a myelpathy spinal cord injury. It also left me with permanent nerve damage. As soon as my neurologist got the result from my nerve conduction test he said to have my attorney contact him. I had applied and my attorney was working on it, but at the time I didn't even have a doctor. When a surgery goes bad it's extremely hard to find another doctor that will treat you. Or at least a specialist.
Now I don't know if it's just me or if you all will have the same problems that I have had, but disability is constantly on me sending out reviews every 2 years. And I was send a basic review in Feb of 2010 and in March of 2011 they decided to do a full medical review. So again i basically went through the whole process. My primary doctor, my neurologist and the doctor they send me to all said I had nothing to worry about. At the end of Aug 2011 I received a letter telling me they no longer considered me disabled so I went back to the same attorney. You can go down and apply to keep your benefits while going through any appeals process. Thats what I was doing was appealing their decision that they had determined that I was able to work again. So you are able to continue to receive you disability check, medicare, and medicaid if you have all those.
Social Security didn't put my paper work through to continue my benefits so I had to jump through hoops to make sure nothing got canceled and the only reason I found out the paper work wasn't put through was my medicare advantage insurance sent me a letter telling me they were canceling my insurance. So you really have to stay on top of things if you ever have this happen to you. The decision was again over turned at the end of Nov. 2011. I received a letter for a new review at the end of Oct this year so that wasn't even 2 full years in between reviews. I do not work, I have tried to have hobbies like gardening and a few things like that. I just didn't think it was good to sit around but I didn't ever lift anything heavy because my neurologist kept me on what I could and couldn't do. And if I did happen to lift anything heavy I'd really pay for it. Extreme pain. I always had pain and have been on hydrocodne since my operation. I also developed neuropathy, migraines and extreme trouble sleeping but my neurologist put me on the right medication so I finally started getting sleep at night. I also had restless leg syndrome .
I'm not sure exactly when the cidp symptoms started. The restless leg syndrome became a lot worse so that medication was raised and then pain started getting worse. Since I live 2 1/2 hours from my neurologist I never wanted to be put on anything higher then hydrocodone. I never wanted to feel high either.
In December of last year is when my pain with CIPD really started to get bad but because of my spinal cord injury it wasn't getting diagnosed until recently.
I wish I could find someone that was already on disability that like me also got CIDP. I'm curious of what expenses I will have and if I"ll lose my medicare advantage plan. I also wonder if I'll get to start at the 5 treatments like most people or if it will be cut back because I'm on disability to like I've seen others having to go every week instead of getting the initial 5 treatments and then seeing how often then you will have to go back for more.
I'm waiting for my spinal tap and then will begin treatment. Thats what my neurologist told me anyway. I should here this week on when I should be able to have the spinal tap and then I guess I"ll have to wait on the approval on the IVIG fusion treatments. My neurologist didn't like the steroid treatments at all and said I'd have to do the IVIG treatments.
So if anyone need any help on disability questions, I'd be glad to answer what I can. For me it was an attorney and having a neurologist familiar with disability.
And if there is anyone out there that is already on disability and then found out they had CIDP, how did that work out for them? I might just be rare in already having one problem and being on disability and getting the CIDP next. I can tell you it took several doctors and many tests to finally go back to the basics and get another nerve conduction test to get the diagnosis.