I have been lurking for a few months and have leardned a great deal. Its been about 8 months since I had my first symptoms in my feet. I do not have diabetics or any other systemic disease that I am aware of yet. I've had lots of testing including skin punch which was positive for small fiber and R-R which was also positive, EMG were negative last summer. All the extensive blood work including 3 hour glucose is negative. I have even had my well water tested.
I have gone from a little tingling in my feet last summer to pain, numbness, ice cold feet and fingertips, swelling, tingling on my lips,face pain,sudden sweating lasting a few minutes and then gone. I am completely intolerant in even 75 degree heat, it makes me feel so sick I am also rarely dropping things. Can't sleep from the pain now in arms and legs.I also have just started have some problems swallowing, the doc. didn't believe that one was related but I have found it in some research articles.
I live in a town where almost every neurologist work in this one enormous practice maybe 18 doctors and full range of testing and services.
My doctor is so busy that it can take three months to get in to see him even as a existing patient. He is also at a loss as to what is happening to me . He is well respected neurologist but not a PN specialist. I finally saw him yesterday and pushed him as to what he thought was happening to me, why this was progressing so rapidly and for a prognosis. So he referred me to the MAYO CLINIC.
I impulsively said ok but my insurance won't pay for it. I live in North Carolina.
I am at a loss ,at finding a PN doctor, at what is happening to my body, scared of the future. I live in the country and most everything I love in life is being outside and physical. Of course i love my family otherwise...
The drugs they have given me don't help at all and make me very tired and stupid.Neurotin, lyrica are awful for me and of course the doc is aggravated by that.
I am in health care field so if I am lost I don't know how most people deal with this "system".
Does anyone have suggestions for PN doctor in NC or a clinic closer than MAyo.
I was also referred to the clinic at UNC last Fall but they have a 10 month waiting list . I was never given a appointment . The physician there has been ill so things are very backed up.
All advice greatly appreciated.

And, for my money, probably better at dealing with idiopathic small-fiber syndromes--much of the research into skin biopsy as a diagnostic, and norming of intraepidermal small-fiber nerve density, was done there, and the neurology department has several neuropathy experts.

Could you tell us what the results of the other tests were, and which ones you've had? I bet we could suggest others, many from the extensive Liza Jane spreadsheets (a great way to track tests over time, and suggest new ones to docs):

www.lizajane.org

What is the R-R test you refer to?

When I hear idiopathic small-fiber syndrome that is not diabetic, I immediately think monoclonal antibodies, vasculitis, and/or celiac/gluten sensitivity (there are other causes, but these seem to pop up more than others); have you had testing in those areas?

I can only double what Glenntaj has said.
But as a note- a 3 month wait is about the norm
for neurologists and neuro specialists.
I waited 5-6 mos for my first visit to Hopkins.
I want to go back for a check-up but my doc is out for gall bladder surgery.
I have to call to make an appt at the end of this month, to know when he'll be back.
Maybe I'll be able to get an appt in July. or Aug- and I've been his patient for over 5 yrs!

Don't worry about the doc being aggravated because those meds don't suit you, there are plenty more options that may help, everyone is different and not one pill suits all, i had the same effect with Neurotin myself, so my GP switched to 300mg Tramadol " slow release " x 2 times daily, no groggy feeling for me with the tramadol & it helped a lot.
best of luck anyway
Brian

I've had a biopsy for celiac, the R-R is a cardiac test for autonomic function which was positive, I've had blood work for sogerans (sp), toxins, thyroid and just about everything you can test for with blood work.Also spinal MRI
I am looking for a new doctor because mine has way to many patients and also lectures around the country.So he is often unavailable and not very happy with me. Unfortunately almost all the neurologists in town work for/with him.
Two of my friends who are internist think that one year is very fast to have gone from little tingling in my feet to serious pain, disablitiy and symptoms everywhere. Apparently this usually takes a long time for most people who are not diabetic.
I have no idea about what is going to happen to me now and feel quite lost with this . Should I quit work and go traveling now if I still can do that? How bad is this going to get.
I am not satisfied that my doctor knows enough about this disorder. For example he did not know that trouble swallowing was a symptom.
It is just hard to comprehend that suddenly your nerves start dying and no one has a clue as to what's happening to you!
I really need advice on what to do next. Thanks

And where you are is a scary position many of us have or are in.

Try this web site first to see if something is anywhere near you:
http://health.usnews.com/usnews/heal...qneur&start=0&

Also got this from the Neuropathy Association, but can't say one way or other about the docs myself:
http://www.neuropathy.org/site/PageS..._northcarolina

Also ask every single other doc you know for NAMES! Check out the good and big hospitals w/in a reasonable distance and go to their 'department' sections of their websites and check out both Neuro and gastro[for possible celiacs'] and see if those cities publish a regional magazine that does like my area does...it every other year canvasses doctors as to WHO they would go to in many varied specialities.... You can usually find a 'sketch' of a doctors credentials thru the hospital and maybe find out the practice and can web that up and find more...or not. It's kind of hit-or-miss, but sometimes you can get lucky!

As for how 'fast' is a fast progression? Well, unfortunately there aren't any real 'definitions' for this, nor are there any for the pain. No one seems to agree? I can only speak from my own situation in that fast is enough to keep you awake at nite wondering if you'll be able to get out of bed the next morning. IF that is a nagging voice in your mind, then start checking things out and make calls.

I agree that the 'norm' is a 2-4 month wait for a first full evaluation. But, if you can swing it, make it clear when making the appointment that you'd try to make it for a cancellation. That happened to me and I not only got the appt.[in less than 2 weeks], but with the neuro dept head! Boy! Was I thoroughly tested! I hope you get lucky that way too! Please keep us up to date on how this all goes -'s- j