Hi Healthgirl,

My experiences are different to yours so I'm unable to offer ideas based on similar issues. But I'd be inclined to think this may have something to do with nerve constriction (pinched nerve) somewhere in your upper spine.

If I were you, I'd be requesting an MRI. I'd also be asking for a referral to a good Neurologist (who would likely order an MRI anyway).

In case you don't know, "idiopathic" means "unknown cause". Your Doctor is giving up. Ask for referrals or at the least an MRI.

My two cents.

Please keep us informed, even if you don't need to come here any more. We love happy endings.

Debs

Very sorry about your experience. Many of us have similar stories and we understand your pain. PN is complicated and difficult to treat. Many doctors do give up but some don't. Keep going until you find someone who is compassionate and understands the severity what is going on with you. And you can get a lot of support here.

--given the range of symptoms you are experiencing, it is unlikely you have a neuropathy that is just affecting the small fibers; the small, unmyelinated nerve fibers control the sensations of pain and temperature as well as many autonomic functions, but you are also experiencing motor/muscular symptoms. That implies disruption of the larger, myelinated fibers as well, which may be peripheral or may come from spinal or nerve root compression.

Often, the symptoms of problems in the spinal area can be exactly mimicked by those of a more systemic peripheral neuropathy, which is why the hunt for cause may be long, expensive, and have a lot of dead ends. But take a look at the following, and compare the work-up and tests you've had to these, which are designed to be very comprehensive for neural symptoms:

www.lizajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

Hi glenntaj,
Thanks for the links. I will compare them to my workup.
I also feel that there could be nerve compression. The spine surgeon said that my MRI says no. He says I do have herniated discs 5-6-7, but they are not what could be causing the entire problem. I am also wondering if compression could lead to a positive small nerve fiber biopsy. I am wondering everything. It is great to come here. I will keep reading other stories so I am ready for my next neuromuscular appointment.
Thanks!

Thanks Debs,
The doctor sure did give up. She is a neuromuscular doc that I was forward to after quite a few neuros. She barely listened to me for 5 minutes and already knew it was small fiber. She did the biopsies right away to confirm and rushed me out. I called the office and the tests came back with significantly low epidermal nerve fiber density. She told me she can give me drugs to manage the pain and discomfort. That freaks me out because I want to find out why the heck this is happening and how to stop it.
I've actually had a full spinal and brain MRI because I thought the same thing about nerve impingement. I even went to a spinal neurosurgeon at Columbia for his opinion and he said no way. In the hospital I had a spinal tap and they tested me for everything they could think of. Im being treated by an infectious disease doc on 3 weeks of doxy in the chance that it could be undetected lyme. It is a month since the doxy so I don't think its lyme. It took a year of weird symptoms that I thought were just hormonal till everything just became too bizarre and painful. I still desperately hope that it is a crazy injury to my neck/brachial plexus from working out in ways my body couldn't handle for too long and it will heal.........