Originally Posted by Shezian
100 types of PN?? Wow. How l am ever going to be diagnosed?
If they figure that out from the testing, or get a clue, that won't be an issue.
On Wed l see the neuro, l just have this feeling his going to play it down, like it's no big deal and send me on a couple of tests and say, they don,t know why l have it and that's it. Well, where does that leave me?
With about (depending on who you ask) about 30% - 40% of PN patients.
In about 30 percent of patients, a specific cause of neuropathy cannot be found—even after an exhaustive search. These neuropathies are
called idiopathic. Probably, complex metabolic and genetic factors contribute to idiopathic neuropathies.
For many people, it may not be as big a deal as other things; it's a matter of perspective, attitude, and different for everyone. For many, it's more of an inconvenience or nuisance. Not all patients get all symptoms, and not all have pain. But those folks may not need support groups, so you may not meet or hear about them.
Finding clues to a cause is another
reason for keeping a journal, and getting/keeping all medical records, test results, & reports. Some people have found the Liza Jane charts & spreadsheets helpful in organizing & tracking tests, and determining which ones to ask for depending on results of previous tests. You can find them at http://www.lizajane.org/
I think it's important to be aware though, that except in a few cases where certain specific causes are
determined, treatment is usually pretty much the same - treating the symptoms. The same applies to many causes that are
What you described is pretty much how I was treated by a couple neurologists (one was the leading PN guy in the area, at a major medical center); they told me they couldn't find anything specific - that I was idiopathic, offered me a prescription for gabapentin, and told me I could check back in a year (if I wanted to) but there was nothing more they could do for me.
I got similar treatment several years ago when I got IBS (initially dxed as Crohn's Disease). They sent me on my way, saying almost exactly the same thing. I did my own research then, found a treatment that worked, and I've been fine ever since.
So this time I did the same thing; I got online, did a lot of reading & research (which is still ongoing) and I'm getting better (albeit more slowly).
Finding a cause would be nice, but I'm not going obsess over it or make myself worse, or drive my family nuts, stressing over it. I would rather spend the time & effort finding things that help, and enjoying life as best I can.
I'm still looking into & trying things, and keeping notes in my journal. I think that's why many of us are here, sharing what we've learned, our experiences, and if not getting better, trying to halt/slow the progress.