 |
In Memorium
|
|
Join Date: Sep 2006
Location: So Cali
Posts: 661
|
|
In Memorium
Join Date: Sep 2006
Location: So Cali
Posts: 661
|
Questions
Diagnonsense - good quesions! At least you'll be going to Mayo and you know you will be getting some good testing...
I dont have the technical background that Glenntaj does - but I can tell you - my PN is severe sensory, autonomic, with increasing motor.... in the beginning (about 10 years ago)I didnt have the sharp burning pain people talk about here - and really never have - even thougth the PN has significanty progressed) - its more aching - completele numbness - loss of propeiation - fatique - buzzing - and the affects on the autonomic systems - which has been very difficult.... my PN is predominately large fiber with an almost complete loss of mylinated fibers, to a lesser degree small mylinated, and then also loss of both large and small unmylinated. (my sural nerve biopsy and continuing NCS/Emg'S done over the years have shown this)
My diganosis - by process of elimination and mis-diagnosis - is hereditrary - although I did get a run of IVIG at a pretty high dose but no real benefit...
They also continue to test for paraneoplastic - just to be vigilant and some confliicting biopsies.....
If you can find a cause you may be able to treat - that would be great.... to know you are doing all you can is also very important - and even just to have diagnosis to get prognosis is most important....
Dont worry about getting idiolpathic diagnosis - just make sure all your bases are covered! Have you checked out the stickies at the top of the thread? Lots of good info... the "lizajane" spreadsheets? Mayo - though I've never been there - is very good - hopefully you will get some great care there.... Hang in there....
|