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Hello Dear Listmates,

    A very gracious thank you to all who responded and heartfelt good
wishes to all who continue to suffer in the dark as I do.  I was
overwhelmed to actually make contact with people just like me!  As time
permits I intend to respond individually to those with similar symptoms
to compare notes.

The following is a summary of some possibilities for neuropathy reported
in part by those who have it and treatments that may help.
* Have you had your thyroid checked?
* Fibromyalgia was listed a few times though I understand there is some
controversy as to whether or not this is actually a disease or just a
name given to neuropathy's that are unexplainable.
* Morton's Neuroma in the foot.
* I would eliminate other causes of neuropathy such as diabetes before
even considering MS.  Some antidepressants reduce pain by reducing the
reuptake of serotonin, and the pain relief is not related to being
depressed.
* My skin is also hypersensitive when I had the shooting pain.  I have
been taking Elavil and I think that may have helped.
* Have your doctors explored and ruled out any type of spinal disc
problem?
* Nerve root compression in the lower spine.  My doctors said I had *no*
herniated (slipped) discs in the spine, and could not explain why I had
the nerve root compression.  After a year and a half in physical
therapy, my pain disappeared.  The therapy relieved the symptoms and
showed me new ways of moving, sitting, and standing to prevent nerve
root pressure.  I also wore a back brace for a year.  It was worth it!
* Sjogrens Syndrome;  It's a rheumatic disease.  Many patients have both
Sjogrens and Rheumatoid Arthritis, while others may have just one.
Sjogrens strikes mostly women;  Symptoms are dry eyes, nose and mouth;
chronic fatigue and neuropathy.
* Reflex Sympathetic Dystrophy.  The hallmarks of RSD are the affected
hands look mottled and sometimes waxy and have cold and hot spots on
them.  There is a web site at: www.rsd.net.
* Vitamin deficiencies (especially B and E) or mineral deficiencies
(magnesium, sodium, potassium, calcium?).
* Heavy metal poisoning (from mercury, lead, aluminum, etc.) systemic
candida, and/or hidden viruses such as Epstein Barre or coxsackie.
* Neurontin, Amytriptilin and Zoloft were mentioned as having some
effect in controlling the pain.
* Workload and stress can bring on symptoms or increase the intensity
and duration.
* While at the annual meeting of the American Diabetes Assoc.  in '97 I
heard George Bernstein from Einstein, subsequently president of the ADA,
talk about gastropathy, a common neuropathy associated with diabetes.
In the course of that talk he said there was evidence for a separate
autoimmune neuropathy.  Afterwards, I asked him if the pathology of this
autoimmune neuropathy was distinct from that of the diabetic variety.
Yes was his answer.  He recommended a review article from early '97
(Annals of Internal Medicine or some such) and said there were people at
Columbia interested in the condition.  I was never able to find the
article and never enquired at Columbia where I did note people working
on MS.  I'm sure Dr. Bernstein wasn't referring to them.
The fact that this neuropathy is autoimmune would account for the
frequent occurrence of neuropathic symptoms with celiac, over and above
nerve symptoms due to cumulative malabsorbtion.
* I want to make you aware of an article by CSA which states that
neurological problems exist with celiac even when on a GF diet.  It is
unknown as to why etc.  There may not be a diagnosis other than that
Celiac is responsible.
* Check out the archives for info on GLA reversing neuropathy.  My
nutritionist suggests taking a total EFA supplement, available in health
food stores.
* Massachusetts General Hospital Neurology Dept. ---
http://neuro-www.mgh.harvard.edu/forum
Just keep scrolling down until you come to the alphabetical list of
neurological topics; click on Peripheral Neuropathy and you will find
many postings.
* The Neuropathy Association, New York City ---  www.neuropathy.org

Many have been tested for everything from Lupus to Lyme Disease, some
have been misdiagnosed from tendonitis to MS.  Doctors have told me it
wouldn't be easy to get an answer.  The general consensus seems to be
vitamin and mineral deficiencies relating to years of undiagnosed CD.  I
in turn will press my internist for tests specific to these
deficiencies.  Will keep at it.  Thanks again to everyone for your help.

Jean
Northern California