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

Dahlek
I see you live in DC not that far from me. Do you have a PN clinic in that area that is good ? The problem where I livein N.C. all the neurologist (18) are in one practice and no one specializes in PN. I have had extensive testing but my doctor is out of ideas. The University PN clinic is not accepting new patients because the physician is ill.
As a health care worker I refuse to accept idiopathic. Thats just a word for we don't know yet what the cause is for this illness.
I'm sure there are physicans/clinic looking for answers . I am trying to find those people.
I just can't accept that my nerves are dying and there is no reason, which equals no treatment and no hope.
Thanks

thorough 'going over' - AND your insurance can help? I'd go to Hopkins.
I myself got the diagnosis thru Georgetown University [which USED to be in the top hospitals list but isn't now because they've changed the criteria] I'd gotten the very first appt I could get to [I was desparate!] and that'd taken a 2 week wait. It would have been a 3 week wait for Hopkins for me. [Bob? Why that was I have no clue? It was over 4 years ago tho.]
IF you are going that far tho? Go to the best! I tell you it can be absolutely worth the wait.
I also seem to recall from here or elsewhere that Emory in GA and Duke in NC had satisfied PN'ers... I wish my recall was better?

Aside from BobB, I know of several other PN and CIDP folks who have been thoroughly tested and evaluated at Hopkins...and all seem to be happy with the facility [tho maybe not with the diagnoses]. Baltimore is a bit too far for me to travel comfortably so I stayed in the area... trying to do a 2+/- hour drive on my own made me uncomfortable in my PN-ness at that time. I couldn't do it now.

Hope this helps. I sure wish I could be more useful. - j