I had my annual physical with my GP yesterday, and of course he asked how I was doing. I told him I was frustrated that after 9 months, seeing 4 different neurologists and going through $30,000 worth of testing - all the neurologists said they can't find anything wrong with me.

After I went over my symptoms with him again, he finally said "it sounds like some type of ideopathic neuropathy". (No kidding..........) Of course, the next thing he said is there's no real treatment for that - all we can do is try to control the pain with medications.

This wasn't a firm diagnosis - and it really does absolutely nothing to help me. But at least a Doctor was willing to entertain the possibility that I have some type of neuropathy.

Now, I'll have to work on him to get some additional testing done. (The last neurologist told me I have reached the point of diminishing returns with regard to testing, so he wasn't going to recommend anything else.)

Did you have the punch biopsy?

No punch biopsy. The Neuromuscular specialist I saw on April 1st left a note in the file that he felt a biopsy was not warranted. Since the NM Specialist is considered the "expert" on neuropathy, I'm fighting an uphill battle to get that done - unless there is significant change in my symptoms. (I should have known better than to take an appointment on April Fool's Day.......)

They have done a lot of testing, and have covered a lot of the typical things to rule out other possibilities. Still, some basic stuff like vitamin B levels have not been tested. My primary doctor has been willing to test for things when I ask - as long as it is reasonable. I don't think I can bring him a "laundry list" of things I want to test, but if I ask about one or two things at a time that are relevant to my symptoms, I think I can make some progress.

I have a pretty physical job, and it is a lot harder with the PN symptoms. One of my fears is that I'll reach the point of not being able to work and support my family. I have good disability insurance, but without a diagnosis it would be hard to make a claim.

FWIW, I didn't have one either. My neuro didn't feel it was necessary as he knew it would be positive, and it wouldn't yield any information as to the cause.

Well, officially, welcome to the club.

When I told my int. med. doc that I had idiopathic SFN, her response was, 'That just means we doctors are idiots."

I did get a chuckle out of that.

Yeah, interesting club.

None of us want to be here, yet we're all glad there's a place to come and discuss our issues with people who understand.

Yep. And we don't sound like raving lunatics talking about vibrating, buzzing and tingling body parts.