Quote:
Originally Posted by jenng
Firstly, welcome and I am truly sorry you are going through this. We have some things in common, though! Sometimes that helps, just to know. I have family history of RA and scleroderma (CREST variant) on my mom's side. I started having sensory neuropathy at age 32 (now I am 43.) Mine was picked up on EMG, however, since it was long-fiber (the sural nerve.) I have tested negative for most autoimmune tests, the only exceptions were a mild-positive ANA and an B2 glycoprotein 1 (IgA) which is a marker for antiphospholipid antibodies in 2003 & 2005. I started Plaquenil in 2003 based on these tests, and I don't know if it helped me or hurt me (rare side effect of Plaquenil can be nerve damage.) I stopped taking it 6 weeks ago.Long story short, my rheumy and my neurologist still think it is autoimmune based. Current labwork is all negative. It does seem to be progressing for me based on EMG results. It sucks to have something and not really know what is causing it.  |
Thanks, jenng! I've wondered for a long time if I had an auto-immune condition that isn't showing up on tests yet. So many of my symptoms seem to fit, but like you, they're all negative. I even have the chronic dry eyes that someone with Sjogrens would have, though I realize that you can have dry eyes without it being because of Sjogrens.
It's interesting that you mentioned you were also 32 at the time you were diagnosed. One of the scariest things for me is not knowing what this will mean for my quality of life in 5, 10, 20 years from now. If you don't mind me asking, what has your experience been?
Thanks for your response again! It's comforting to be able to talk to other people who've dealt with this.
Quote:
|
Do you know if you were also tested for the other known antibodies to peripheral nerve? The Quest/Latov clinical application has a list of these serological tests, as sometimes more than one can be found, and some are associated with monoclonal antibodies (M-proteins)
|
Thanks, glenntaj. I don't know exactly what I was tested for, but I'll definitely ask on Monday. Are you saying that these are the tests that should be run, if they haven't been already? There's so much information and it's all a little confusing to me right now, so I just wanted to be sure! lol
Autoantibodies to Peripheral Nerve Antigens
Asialo-GM-1antibody
GD1a antibody
GD1b antibody
GM-1 antibody
GM-2 antibody
GQ1b antibody
MAG/SGPG antibody
Sulfatide antibody
Thanks again for your responses!