I am still in diagnosis stage....and I'm wondering what things caused your neuropathy.

I have had multitudes of blood tests, two MRI's of my brain, last evening an MRI of my S-1 to L5, and on 9/'12 I have an EMG and other things.

Some of the eliminations were: Lupus, Sjogren's, Scleraderma, Lymes, Liver and or Kidney disease, diabetes, HIV, Hepatitis of every sort, vitamin deficiency (though not deficient, I have started the B-12 MelodyL recommended) blood culture, CBC, and on and on.

So, after all that and what's to come, I'm wondering what your diagnoses were and if you'd share how you and your dr. came to these conclusions.

Thanks!!

Do you have only sensory symptoms--pain, numbness, tingling, shooting, etc.--or does there seem to be some motor involvement?

Any autonomic issues--sweating abnormalities, dizziness, blood pressure drops, heart rate irregularities?

Often, the differences in these can point to what nerves are affected, which might influence a search for a cause and possible treatment.

Part of the problem here is that there are several hundred KNOWN causes of neuropathy--and yet many people still wind up labelled "idiopathic" with no discernable cause. AND--there are other diseases of the nervous system, as well as disorders of the brain/spinal cord, that can mimic the symptoms of peripheral neuropathy exactly, so that investigations are often long and based on process of elimination (and rather expensive).

You've apparently had a good number of tests--but no where near a comprehensive work-up, which can include many of the tests for nerve autoantibodies, genetic abnormalities, toxins, etc. that can be found in the Liza Jane spreadsheets--www.lizajane.org--a great way to track test results and suggest new ones to less aware physicians.

On another thread, I made a long reply about the nature of small-fiber neuropathies not being detectable through most modalities (they will not show up on nerve conduction studies or EMG's which can only measure gross damage to larger, myelinated nerves); it often takes quantitative sensory testing or skin biopsy to show the damage, and these tests are not widely available (one usually has to get them done at a tertiary specialty center).
Take a look at:

http://neurotalk.psychcentral.com/sh...ad.php?t=26824

The information and links posted there--many of which also show up in the Useful Sites section at the top of this board--may help you get a handle on what may be going on.

to the first question...RE: Sensory involvement: Yes, to all of the above...... in my feet, calves, thighs, arms, hands, fingers, face and lips with some twitches around my eyes at times.. and I've been diagnosed with restless leg. It appears that I don't have motor involvement if that means do I have any difficulty functioning and walking.

I have sometimes felt "light-headed" but not really dizzy. I have felt that my center of equilibrium may be "off" though there's nothing wrong w/ my ears (ie. fluid, infection, etc)... and I hold on in elevators because that movement makes me feel uncomfortable.

my BP was actually very high at the neuro's office... never been that high but I think I was anxious.

In the very beginning of this my ANA was 1:1280 .. with fever ..indicating some autoimmune involvement... but subsequent testing was negative as was all other autoimmune testing.

Rheumatologist thinks I "had" a virus... but the numbness, tingling, pain, burning and sharp pin prick and jabbing pains have not stopped. Some of my fatigue has subsided since I nap on weekends and am taking RLS meds for a better quality sleep. My legs still feel heavy and cumbersome in movement as the day wears on.

I recently recalled that I was in a car accident last September and briefly had the pins/needles in hands. But it had subsided. I also had a double herniated L-5 in 1992 which I worked through 9 months of rehab to almost eliminate pain and inability to walk properly. Very minimal symptoms unless I overdid and then a few days exercising again reduced that discomfort.

The neuro says I have carpel tunnel and that the L-5 injury could be causing this (15 years later?) but what about my face? numb/pins/needles in lower face and lips?

Babs:

Just hit edit under the post you wish to delete.
YOu will see the word delete . Click on it, and follow prompts.

No biggee.
Take care,
Melody

I'm trying to get a "fix" or an Idea as to what can be causing mine.

I got the results of my spinal MRI (S-1 to L5) which showed a herniated L-5. But, that's no surprise...I've had that since 1992!!

and that's on the right side.

Does that explain my numbness/pins/needles/tingling/burning on the left? .. or my hands, arms and face that also have pins/needles, numbness and tingling?

It's been three months since I started on this diagnosis quest... is it a moot point? have any of you been diagnosed with what is the cause of your neuropathy?

I'm feeling quite frustrated... anxious... and exhausted by the inability to diagnose..

Hi. I understand cause I still don't know what exactly caused my issues. I can take guesses but feel in my heart it may be more. I guess for me I have to start looking outside the box and even if its small chance push the test or doc apt. I have noticed docs won't always do that. if not a big chance it could be. I have been to so many in and out of state and the tests like you. I think in addition though for me getting my pain under control so I can progress. I live in fear and anxiety too of it getting back to the way it was or getting worse. I'm 29 and have been dealing with this for 6 months well more now. Anyhow I have been looking at connections before that maybe I would of not thought twice about but now do. Also for me when I have one issue my others seem to lessen. I'm keeping a log and also all my records to bring to my docs as the new ones pop up. Good luck and welcome to our boards.