How to find a Doc, New to this!
 

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.

Well--Hopkins might be closer.
 

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 :)

What to do?
 

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

Savannah you are right to ask questions
 

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 -:hug:'s- j

Ideas/Best clinics??
 

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

If it were me? And I wanted a
 

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

Duke
 

Thanks
I live near Duke, got in very quickly . They looked at my records, said you have PN and offered me nothing. Saw the Doctor for maybe 10 minutes. So don't waste your time going to Duke.
People who live in the area avoid Duke because that's a pretty typical experience no matter what illness you have. Its the system and its a mess.

Savannah, we can help you in many ways here, and one is guiding you through the diagnosis phase. Please go to the charts at www.lizajane.org and download and print them out for yourself. Ask your doctors for COPIES of every test you've had. Then see if you've been fully worked up.

Is your insurance an HMO? Can you go out of network at all? My insurance let me go out of network, but the copay was very high. When Mayo billed me, I told them I could either send them a small sum each month over a few years, or negotiate down. They negotiated down. Also, not knowing your financial situation, I have no idea, but could you afford a copay? It might be worth dipping into your nest egg, if you have one. Mayo will do all the right tests, but I agree with Glenntaj that so will Hopkins. I dont know if they are as organized as Mayo.

Please tell us more about yourself--your age, other illnesses, when the symptoms began and how they moved, if your EMG shows axonal sensory neuropathy, demyelination, inflammation, etc. You need to get your hands on the report to tell us. I agree with your internist friends that one year is fast for this. It could be many things, including toxins.

So, maybe you could give us a summary of who you are, how old, your general health, exposures to drugs/implants/toxins, if anyone in your family has anything similar. Give us a little summary.

And no, don't quit your job and think this is the end. Some of us get better.

I got sick in 1999 with a rapid onset, and also had autonomic findings on cardiac testing. I was in pain, had shocking, burning, awful sensations, vibrations, everything.
But I think I had an exposure to something, and I've embarked on the healing plan in the stickies, devoting a lot of time and effort to doing everything possible to stay away from toxins and provide the supplements that the nerves need to rebuild. I'm much much better. Sometimes I have pain in my toes and balls of my feet. That's not unlike a lot of other people my age, without neuropathy.

Others of us have gotten better. Check out the sticky on that.

You even might have CIDP, which is directly treatable.

Take heart, you're at the beginning of a journey, not the end.

Savannah
 

Sorry to hear you are part of our group - but as you can see - people are here to help....

I live in an area where I assumed the tertiary centers would be my best bet -they were not - I'm now seeing some wonderful docs at a small hospital near my home - after many numerous calls to different hospitals, checking credentials on docs before making appps with them, etc have found some really good medical people.. a first appt yes, usually takes a while to get with a specilaist.... but is worth the wait if they are good....

The spreadsheets may help your docs with genetic and other tests to order etc that they have not considered - and having them completed when you see them and letting the doc take the lead on deciding what to order is sometimes important... I've found they like to rule things out in logical order....

I had a very rapid onset of almost full body sensory and autonomic symtoms with severe loss of large fiber, also small fiber loss, additionally a great deal of axon degeneration (your heat intolerance definately sounds like autonomic symtoms) - after a slow beginning of about six months... during which time the docs didnt really do much at all except tell me I had PN.... and after which I need help to ambulate, cannot digest food due to auotnomic complications (8 years now) - have cardiac complications - and they are still looking for cause..... I've had several diagnosis - gone thru IVIG - and still no improvement... one doesnt know how this disease will progress - but you have the advantage of getting this realatively early and perhaps finding the cause and/or treatments that can help you.

If you can afford to go to Mayo - thats great! Remember - they dont put you in the hospital though - so you need to also have funds to stay in a hotel, food, and for transporation to and from etc... (Angel FLight and similar groups sometimes offer to chronically individuals free air transport - just give them a google if thats an issue).... I've also heard great things about Hopkins - I truly think it depends on the doc you get!

I wish you the best in your quest - just want to encourage you to be proactive!!!!!!! You have to be your own advocate!

results
 

Just a quick reply as I also am a caretaker and will be busy with that the next few days. I'm female,age 59, no serious illness, a kidney donor 1984, live on a small horse farm and also very active. Well water but had it tested for toxins. Tested clean.
NCS and EMG are negative, all blood work negative for auto immune, sogerons, toxins, iga, ana,. Skin biopsy was positive thigh worse than ankle, R-R positive.
I first felt almost like dry skin on my legs which progressed to foot pain, tingling, pins and needles, then my arms also and hands. I have cold feet and fingers, cold like standing in a Colorado creek. I have temperature sensation loss. Face pain, lips tingling and problems swallowing.
All this happened since last July 2007. I continue to have more symptoms, now end of my nose gets cold.
Can't sleep, fall asleep easily but awaken in pain.
Thanks so much

What about mri's? and extensive blood work? Finding a doc that will look outside the box has been my mission this year. I have traveled like many here out of state and found the battle very tiring and painful. What I have learned from here is you can't give up. It just takes that one doc and the other ones you come a long that are "losers" you have to try to forget. If you can maybe send your records to some major hospitals and see if they can help you or would like to see you in person. I did that for Mayo and they didn't think they could so I went to Cleveland. Take care

Savannah, I like
 

your description of how COLD feet feel! That is a 'keeper' in my book.
As for the dry skin? Please explore this web site about diabetes and the skin....while many of us do not have diabetes as a culprit, a lot of the mechanisms of our complicated bodies are very similar in terms of what happens.
It is worth reading the abstract and the introduction, then skipping over to the diabetic neuropathy section. It is also fairly readable compared to many sites.
http://telemedicine.org/stamford.htm
All in all, I've always read it all to to mean to slather/moisturize those feet [maybe other parts] generously and keep an eye out for the possible nasties that can happen when one cannot FEEL what's going on down there [I mean, look at all Melody's Alan has had to go through for that very reason].
As for where to go from here? I have no new suggestions for you other than what I and others have provided. I truly wish I did!
I agree with Liza Jane about one thing? Quitting your job? Why, because of INSURANCE coverage - is why! Should you have to leave...be sure to get COBRA or the like! Continued coverage of some sort is critical should things get squirrelley down the road...New coverage would exlude such 'pre-existing' conditions and then you would be up the creek w/o any paddle. COBRA and continued coverage out of work are very expensive, but that continuance assures that you can ultimately be treated should they find a diagnosis.
And from what you have elaborated about.
IF it were ME? I might gently ask my internist friends for advice about which steps to take about now? IF the neuro structure is SOO tight there, maybe go the Rheumatologist route? Sort of a back-door approach, but an idea.
YOU have to follow your instincts on this, and obviously they are on a red-alert type of alarm. While it may take you months to get any appointments? Do it now and keep the 'replay' going on in your mind about possible causes.
For me, my troubles arose about 2+ months after finally winning a long fight with a 2 month bout of pneumonia... Every strange and little 'thing' from 'before' can and does impact our neuropathies. We are not hot-house flowers.
I can't speak for all, but the whole issue of mis-diagnosis or laziness about persuing additional testing to the best levels is too often absent among folks new here. To me, like you, IDEOPATHIC is pretty much a VERY BAD word? Many call it 'IDIOT-pathic'. Apt I believe.
Please get appts and see what happens! I mean? It can only get worse?
:hug::hug:'s - j