Briefly, I have small fiber neuropathy and just this week had autonomic testing that was normal. This was done by a PN neurologist trained at Mayo.This is my 3rd neuro.
For the last ten days I have been so extremely fatigued that I don't feel safe driving and have been unable to work(self employed). I have had episodes of this exhaustion before my first symptoms of Pn a year ago. However it was usually one day of exhaustion but I'm now on my 10th day of not functioning. On bad days I don't have the energy to use the computer so I guess I'm slightly better now that I can sit in a chair but that's it.
The neurologist said the fatigue I am experiencing is NOT a symptom of small fiber neuropathy and all my blood work for auto-immune disorders have come back negative.
My internist (15years) now says there is nothing she can do for me. so I'm on my own with this, I don't know where to turn. Of course I'm angry at her but she also has tested for everything which has turned up normal. Great but why is it tough to leave the bed and do anything. I explain this is not depression, I like my life even with the pain. I never miss work.
So I'm offered a prescription for Ritilin. I guess to give me a lift so I can function. This scares me, taking drugs to mask my exhaustion. My body is saying I can't function. what will it do to me to over ride my body with this stimulant.
Scared and on my own.
What type of doctor should I try next?

Has your iron and ferritin levels been tested? Any possibility you are anemic?
are your periods heavy?

Low iron can also be a precursor to neuropathy

You could try homeopath or naturolpath doctors. Many of these are MDs who practice nontradional medine, usually using natural products and techniques rather than pharmaceuticals.

Actually my ferritin is low normal and I am on iron supplements. Low ferritin doesn't give you any symptoms not untill you're anemic. I'm not anemic. But you are right, many of the symptoms I have fit anemia and its been tested many times so that's not it. Thanks

Is your mouth sorta dry. Are your eyes bothering you with dryness symptoms? Are you having to change the prescription in your glasses often? Fatigue is a classic marker for Sjogren's Syndrome. And has he done the specific tests for sjogrens? (SSA & SSB)

Billye

Hey Savannah,

I only mention it because my ferritin was low normal and I was not anemic, not even close to anemic. They put me on iron supplements and it barely improved, partially I think to absorption issues that I have and the insulin resistance.

I now take precription iron supplements once a day (its called repliva) because the over the counter did nothing to improve it. And within three months my symptoms have improved greatly both the fatigue, the neuropathy symptoms and the shortness of breath, rapid heartbeat etc.

Then I tried for two months without cuz I thought that I had enough iron stores and within two months I was back to where I was.

Maybe its worth asking the doc for the prescription iron.

I hope you get some answers soon.

Yes I've had the test for sjogren and I don't have eye problems . Its a real mystery and thats why I'm left on my own. I can't find a physician interested enough to look beyond lab work. All labs and my extensive workup was normal except skin biospy. Strangely the more severe my fatigue and exhaustion the less trouble I have with pain or any PN symptoms. Maybe its because when I feel this bad I can't do anything. It does seem that the more active I am the worse my PN hurts.
The only other thing is my skin looks 20 years older than I am. Its dry, wrinkled (arms and legs) and that actually was my first PN symptom, very dry skin an my legs.

I can relate I was on the hunt for a good internist and saw 4 this year in hopes. What other specialties have you seen? I am assuming a neuro but others? Since my internist hunt was bad I went to many specialties with not a lot of answers still but extra tests and ruling out. Have you been to an endocronolgist or a reumo? Please hang in there and just because one doc gives up you can't. I have been brushed off by so many docs and have been told they don't know what to do but after I take a little break. Usually this is after I go on my rant I calm down and move onto the next.Right now I am trying to be on a doc break but I try to remind myself it just takes 1 good doc to help.

Savannah -

Daniella is correct, it takes just one good doc. Please hang in there and keep hunting. Is there a family member or friend would could take up your "fight" and help?

I think I may have finally found an good endo doc. He said that finding the cause for enuropathy was like tire tracks on the beach. When I asked what he meant by that, he said "finding the truck that made them." He said we'd start with the normal tests and go from there. So, maybe this doc is different from the rest.

Will wear you out,PN pain can wipe you out,please be careful driving.Can
you feel the pedels,have you had a bad spamsa in you foot driving. Just
wondering,I know you must make a living.I had to stop driving many years
ago,did I hate it yesbut I worried about others..This must and will be your
decision. Could I ask when was the last time you had a NCS? Am very glad your not stuck with Sj. like Billye and I. But there so many types of PN and
and so many other things that may screw you up ,such as a adrilian gland
Well now that I messed up your day i'll quit..You got some good advice just
make sure you try to find a Dr. Neuro who knows what PN is not just a headacke..Sue