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Old 12-17-2017, 02:10 PM
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ElaineD ElaineD is offline
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Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
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ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
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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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