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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@anniemae

John, thank you for this information. I have had several tests so will look this information up. Anniemae

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Replies to "John, thank you for this information. I have had several tests so will look this information..."

Hi anniemae,

I've probably said this far too many times, but...... My Neuropathies are all 'idiopathic' and there are many. And I continue to ADD neuropathic conditions as times goes on, alas.

In many cases Neuropathy is a condition that occurs frequently with Autoimmune Disorders. In autoimmune disorders the Immune System allows autoantibodies to attack the organs/systems of the body, causing damage. There are over 100 autoimmune disorders, with Lupus, Rheumatoid Arthritis, Sjogren's, Multiple Sclerosis, and Psoriasis, to name a few.

In MY CASE, I do not have the autoantibodies involved with autoimmune conditions. However I do have an Immune Disorder, Primary Immune (or Antibody) Deficiency Disorder. This means my Immune System is lacking in some of the antibodies that protect me from disease. So I have infusions every four weeks (IVIG) of gamma globulin to add to my immunity. Now I don't get sick all the time.

So why do I have neuropathy? My Duke Immunologist, who studies and treats many people with my Immune Deficiency says: We use the tests we HAVE, not the tests we NEED. So there isn't a test to established WHY I have Neuropathy. But she believes, after her study of my Immune Disorder, that my Immune System allows Cytokines (a normal part of the immune response against outside attacks) to attack my own body, causing my neuropathies.

So my own body is causing my neuropathies. There is no cure and no real treatment. I have had every single genetic test and all genetic disorders have been ruled out , I have had a spinal tap to rule out MS, I am NOT diabetic, I have no chemical exposures, and I'm not an alcoholic. I have NO vitamin deficiencies at all.

My Duke Immunologist believes that perhaps some day a genetic correlation will be found, but probably not soon.

It is very hard to have chronic conditions. Not only do we not know what is going on, but most of our friends and family are completely baffled and perhaps impatient with something that cannot be diagnosed and cured NOW.

Regards, ElaineD

Has anyone ever noticed with the weather changes that it affects more tingling? Maybe it is just me.