Hi

I had LTD and SSDI at one time, my husband and I both decided not to continue with the IME's they scheduled for me about every 6 months...it was too violating. (That said, keep on fighting if you can afford the attorney and stand the IME's. I went back to work for 2 years, stopped working and then was self employed, and then stopped working. As of last year, I still qualified for SSDI, but my docs wanted me to keep working as they felt I would deteriorate if I didn't....now they tell me I am 'disabled.'....however, now I did not contribute for SS for over 10 quarters so I can't apply anymore. I am basically out of luck unless I work for a while again and contribute, which isn't going to happen as nurses need their hands, and mine do not work, not to mention, I can not lift 50#, and no, nurses do not get desk jobs, unless it is knocking people like you off disability (no thanks) or the nurse has been with the institution for umpteen years. Plus I have been out for too long. I also recently flunked a typing test at the local voc school...(I was amazed, as I didn't think my hands were that far gone! So there goes the clerical job. My only option is self employment.

Right now I have small fiber neuropathy, (sensory and autonomic) which has not responded to IVIG or 16 weeks of IV steroids, so it is not inflammatory. There is research out there to indicate that some people get sicca from neuropathy.

My labial biopsy was read at Mayo.

I am seen at a tertiary research center regularly and am in the process of testing for the more rare disorders that have SFN as a component, in addition to the other symptoms I have. My case is progressing fairly rapidly but complicated by an old spinal cord injury from a high speed head on, and an old case of Lyme. Some of these disorders I am being tested for are orphan diseases and just not worth discussion on the boards due to rarity. If I end up with one, I will post all the findings, until then, I am still 'idiopathic'. I do have some really great minds working on my case, as they feel it might be key to other cases. It is hard to wait for definitive answers, but I would rather do that at this point than try any thing just to see if it works. Some treatments are totally contraindicated in some diseases that cause SFN, where in other diseases that cause SFN they are mainstay. Lyrica and other anticonvulsants are just one example, so it is best to wait right now for me, anyway.

I have significant gastroparesis, it is part of the autonomic neuropathy. For me erythromycin helps a bit. There are some meds that help, but it is not a pleasant condition, and most meds for it aggravate my horrible RLS. I have a ton of issues and don't want to bore you or others with the extensive list. (Trust me, it is boring.)

MS criteria are 'functional'. That is key in proving disability. Insurance companies and SSDI are getting brutal. I referred you to that list so you can see what the 'functional' issues are. (I did workers comp at one time....I quit pretty fast, as there were people I felt that were disabled and my bosses disagreed...yet they handed out money to the one's with bigshot lawyers.) I also did consultation for personal injury lawyers. Disabled people really do not have the protection that is commonly thought. You have to have money to take these cases to court, few lawyers take them on contingency and believe me, you never want to pay an attorney by the hour.

I am one who really doesn't want to get started on Iraq vets, my son is one of them, hit by an IED 3 weeks prior to deployment home. But it is good to hear other people care.