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Old 12-17-2017, 05:03 PM
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LizaJane LizaJane is offline
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Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
LizaJane LizaJane is offline
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LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
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I believe the dose is higher for demylinating neuropathy, and if you have that, the dose would normally be approved.

But you sound like you might have Lyme, which causes both sorts of neuropathy. That's what causes my neuropathy.

Please get a full Lyme w/u from a doctor who actually treats late lyme.

Liza Jane


Quote:
Originally Posted by ElaineD View Post
I have Primary Immune Deficiency and have IVIG every four weeks, and have had for 4.5 years.

My dysregulated Immune system also attacks my organs and systems, wrecking havoc. Both my Peripheral Nerves (large nerves in my legs) and small fiber nerves have been severely damaged. The attack is not autoimmune, because I have no autoantibodies (these show up on blood tests), but probably carried out by Cytokines or other biochemical substances used by the Immune System for our defense, but can be used for attacks on the body, as well.

I also have Sjogren's Syndrome (but not autoimmune, of course), hearing damage, lung damage, and bladder damage. I have severe coronary artery disease.

The underlying mechanism is damage from systemic inflammation.

Because my IVIG is for Immune Deficiency, it is not at a level which can help my neuropathies.

I wonder if massive infusions of IgG can stop the progress of neuropathy and reverse it? My neuropathy is of the demyelinating sort, and I would need re-mylination of my nerves for healing.

At this point I walk with braces and a walker. I take 3600 mg of gabapentin daily for major (but not complete) relief from my SFN.

Most of the world of conditions related to Immune Dysregulation (from whatever cause) is still uncharted. Medical Science has made small inroads into this territory. My husband is an Immunologist, whose principal work was on transplantation immunology. He was shocked when his own wife fell victim to major immunological conditions.

Regards, ElaineD
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LizaJane


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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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