For those of us with no dx or idiopathic.....
 

I have had a thought lately, I wonder which group is better off, those of us with no dx. or the idiopathic "title" or those of us with a found cause.

There are two ways of looking at it.........

If no cause found, we have no way of controlling progression (do all neuropathies progress?)
Also, it is mentally hard to accept.

Those of us with a cause have to also deal with the disease itself that caused the neuropathy, but have some control over progression of neuropathy by keeping disease in check (if possible).

Just my thoughts for the day.............

As a "need to know" type, am relieved in a way that the Dx of Sjogren's was made as the cause for the SFN. But Sjogren's has its own issues that aren't very pleasant.

Was really ignorant in the beginning and never really knew what the ramifications of neuropathy were, so thought the neuros would just give me a script, I'd take it and everything would be fine. Silly me.

My Dx is idiopathic polyneuropathy so I don't know the cause or even which peripheral nerves are effected for certain. I've had 2 EMGs, 3 MRIs, a zillion blood tests, a skin biopsy, and an endoscopy. They want to do a skin biopsy again in a year to see if anything has changed assuming my condition shows no change or is worse. I am also begining to have autonotic sympthoms, which imply SFN, but need some testing done for that also. If the weakness in the legs or hands gets worse probably another EMG. With all that, mostly done at Johns Hopkins, I still don't know what is causing the PN.

I guess I'd like to know so there is a chance to slow progression. May not be possible but without knowing the cause there is no chance to effect progression.

Call me nieve or just plain stupid but if mine has no known cause then maybe some day it will just go away, a gal can dream..........

I meet all the diagnostic criteria of Sjogren's, except for the +SSA/B and I am not convinced that Sjogren's caused my neuropathy. I have a lot of lot of potential causes for neuropathy, including having had a case of Lyme, HGE, and spinal contusions, not to mention iatrogenic possibilities.

I could NEVER pin my cause on any one thing.

If I had a positive SSA/B, I may be more inclined to 'blame' autoimmunity, but, I remain unconvinced in my case.

I have no DX and certainly know that if I did, it would make alot of difference to me mentally and emotionally. Even if it was idiopathic. At this point they won't even call it neuropathy, because I don't have loss of sensation. I just want a name to call it so I can at least move on from "they don't know what is wrong with me." Then when people ask what is wrong, I can have an answer. If I had a DX, I'd be more able to accept this major life change and more easily begin to move on....not to mention, probably get better pain meds from the Dr's if I had a DX.

Learning what you don't have is the process of learning what you DO have.

In time, things will likely emerge.

I'm sorry you have to go thru the dubious diagnosis period....it's hard, I know.:hug:

Cy,, thats why i;m letting it get so bad that they cant ignore it,, I guess if you go in with eyes falling out they might try to find out why,, or send you to a eye doctor,,

That is possible and sometimes does happen but I'd still like to know in case there is something I can do to help

Initially, I was labled with peripheral polyneuropathy. Then neuro #2 dx SFN, now with a normal skin punch biopsy, so I'm still in limbo. They know I have neuropathy with altered sensations, but not which kind. I'd hope to get some blood tests for heriditary causes, but current neuro just wants to wait till the new year to zap me again a gazillion times and to tell me again, what he thinks. I would really like to know what it is so if it can be treated, I'd like to do that as well. But...my doc just focuses on the burning and apparently, not much else.:(