new with no diagnosis
 

I'm not sure if this is the right forum for me as my symptoms are, um, spreading, but we'll give this a shot.

My symptoms began suddenly four months ago, starting out as what looked like carpal tunnel in the right wrist and thumb. Left soon joined in. I did hand therapy and NSAIDs for too long. Super painful thumbs and electrial shocks actually got better. Electrical testing was negative (actually way above normal). THEN the tingling started on the bottom of my feet. And pain. Pain and tingling moves up. On the left side it's up to my hip. Left side in general is worse. I am able to walk OK (sometimes I drag) but not for, like, three days in a row. Activity and holding my arms up make it worse.

Soon after it all starts up in my head. One day I feel tingling moving from my left ear across to the right side of my brow. I have trouble swallowing that night. The head pain has been intermittent, usually every three days, for a few weeks now, but it's getting much worse, more pain every two days. Ears, teeth, general trigeminal area plus the back of my head now. Some eye strain, but vision is OK. Only a few seconds of tinnitis, I think hearing is OK.

Blood tests show only low D3. I am 42, eat right, exercise and otherwise healthy. MRI of brain is normal, neck shows herniated disk at c5-6, which would only cause the finger thing. I've tried neurontin and gabapentin, trying Lyrica now (definitely wasn't working last night).

Brand new symptom: red spots on the roof of my mouth along with pain while brushing. Neurologist has just about given up on me. Anybody have any ideas before I head up to a bigger hospital?

Yes, head to a bigger hospital.

The c5-c6 herniation--
 

--depending on what direction the propulsus is spreading from the disc, might account for more symptoms than just the upper limb ones. If it is affecting just nerve roots off to the side, then hand/arm symptoms would be the rule, but if it's affecting the cord itself, you might have symptoms in any part of the body below that level of the neck.

Still, given what you're describing, sounds more like you have some infectious or autoimmune problem going on. You definitely need more extensive testing, preferably at a tertiary center/teaching hospital, and using the Liza Jane spreadsheets at www.lizajane.org might be a good place to start to suggest tests to doctors and to track results over time.

If there's a Mayo clinic near you make an appointment!

Only if you can't get to another testing center, such as Johns Hopkins, Jack Miller Center, Cornell-Weill, etc.
Mayo is not high on the list, from past posters' issues..

re: hospitals
 

Oregon Health & Science University is next on my list. Anyone have experience there?

The left side of my body is spasming at night. I can't control it once I drift off. Left eye has big old red spot this morning.

I agree about Mayo,, when I was there in May,, they pretty much dismissed the punch biopsy results,, saying they may have been taken from a site that had been damaged from a injury or something,,

Do they have a neuropathy center there,
or just a neuro dept (how large a dept?)
that has docs who treat PN?

Diagnostic options
 

You initially described some classical symptoms of peripheral neuropathy. I'm not sure about the mouth sore, but the disorder Burning Mouth Syndrome has recently been shown to be associated with certain types of peripheral neuropathy as well(Google "Burning mouth Lauria"). Intraepidermal nerve fiber density testing is currently the gold standard for diagnosing this frustrating disorder. Short of visiting a Mayo clinic in person, consider asking your GP about submitting a skin biopsy sample for ENFD testing. **
Best,
Chris

Dear Achy!
 

Since we've not heard from you? Can I guess that you are in a hospital?
With either GBS or 'something else'? PLEASE POST MORE to us so we can help you thru this awful time. Many of us have been 'there'!
Just know that hearts are with you and pulling for you!
Let us know how you fare, when you can, if you can. Many of us can help you thru this all!
:grouphug::grouphug:!'s - j