I've had a lumbar MRI, EMG and NCS...all reported to be normal. The copies of the EMG and NCS weren't in the file at that time I got the copy. I had a sleep study 2 years ago that showed a big delay to sleep onset, no apnea, some leg movements and 45 awakenings that there was no specific reason for. I also am severely REM deprived.

Previous tests with GP show negative RF, Pos ANA with 1:40 titre, Low Vit D (taking supplements), B12 is 227, Ferritin is in the 50's..nothing else really stood out and I've poured over these blood tests and googled everything I didn't understand. Is Folate separate from B12? I don't think that was tested. In 1998 I was tested for the ANA sub test thingies (anti something or other) and they were negative.

I understand that there are other neuro tests for temp and vibration--she didn't do any of these.

I also did get a copy of my records from the original neuro (to take with me to the sleep specialist)...talk about bad charting. She got my name wrong and the company I work for in her letters to my GP. Looked like a typewriter from olden times was used. She couldn't look at the form I had to fill out on the initial visit that had this information?!

That's how I knew about her reporting of the pin test on the original visit. I've already identified a potential other neuro that I'd like to go to but since the original one did the short term paperwork for work I can't just not go back. I mean, I could but I don't think it would look good. I plan to go to her, ask her specialty, question her on experience with PN and then ask if she thinks I should be seeing someone else (of course, whom I've already identified).

She said at last visit (in Feb), "I think you need a sleep specialist because I don't think it is RLS" and then referred me and wasn't going to make a follow up appt. I said, "Don't you think my work will think its odd that I don't have a follow up with you?" So she then made one for July!

The sleep specialists were great in retrospect but only want to deal with the sleep issue and not the leg pain and sensations so they said you need to go back to her for suspected neuropathy. I called her office two weeks ago and the earliest she could take me was 4/30.

I think some of my frustrations lie in that if she was attempting to totally pass me off to someone else, she wasn't explicit enough.

I feel like (in the absence of other diagnoses) all of my symptoms could be related to one syndrome like Fibro or lupus and yet I feel like the Drs want to compartmentalize the symptoms and treat separately. This obviously isn't getting me anywhere yet.

I have the rheumy appt on Mon and then I also have a renal ultrasound on Wed as I have history of kidney disease on my father's side. I suggested these to my GP and she agreed when I saw her last week. But, she also wanted me to go to a pain clinic b/c she thought I might have a pain syndrome. My Heath Ins doesn't cover these Docs and I'm not willing to give up and follow a path that there is no other course of action until I get final weigh in from the rheumy and possibly a neuro that is knowledgeable in PN.

Like everyone else here I'm sure, I'd prefer to be completely healthy but if that isn't the case, I at least want a syndrome/disease path identified so that I can attempt to be treated so I can get back to my life! I miss my life. I like my life.

I have tried neurontin, amitryptilene, cymbalta, etc...I was either a zombie or there was no impact on the pain. Currently only on vicodin (approx 3/day) which isn't cutting it but is better than nothing.