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.:(

Hearing all your stories of Limbo at least makes me feel better that I'm not the only one.

Thanks everyone :grouphug:

Idiopathic Hypertrophic Pachymeningitis
 

It took over a year, 2 different brain surgeries, any and every specially doctor out there finally Baptist hospital could not DX my disease ,meetings sending test to another state and no one had ever seem anything like my condition, finally my wife asked if we needed to go to Mayo or John Hopkins hospital and the rhemuatory doctor said let me call another doc here at Vanderbilt Universary Hospital and see where he would direct us, this was a brain cancer doc,we know it is not cancer... but he gave him a name of a guy who is in the Vanderbilt Group over at the MS Clinic, got the appointment, all test and MRI's Spinal Tap results everything I had been tested for with neg results were sent before the appointment, walked in he asked a few questions printed out a page on this IHPM and that was my DX everything it said I had, I was happy to have a name of something so rare, but it had a name....Then treatment began I was told this would be trail and error for the coarse and then we finally found a medicine that helped after all the high steroids and other drugs, called Cellcept I have been on it for nine months, things are better not a miracle drug, but I have improvement with this disease.

Interesting topic/post brought back today...I think about this question myself, since mine is all hypothesis and I wont do any further testing.

Why bother??

Results are the same, pain meds, no cure, etc.

Sometimes I would like a "label" but most times I realize a label wont help. Now if there were more hope for a cure if I had a label then I would probably pursue it more.

I have had PN in my feet for over 15 years. I know that it is probably genetic as my Aunt, Dad and Sister all suffered with it. I have been able to manage it using good diet and supplements. It is now just in my toes with no pain, just numbness and sometimes tingling. I am fine with not knowing the actual cause as it really doesn't matter as there is really not much that the mainstream medical community can do about it. I have not had extensive tests as I didn't want to waste my money.

I go to a dr that takes a very progressive integrated approach to treating his patients. He has tested for food allergies and nutritional deficiencies. Following his advice and using the diet and supplements suggested in this forum has really helped.

Have a very Happy New Year!

Integrative MD's are really great! I agree. :)