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Small Fiber Neuropathy

Neuropathy | Last Active: Aug 30, 2023 | Replies (105)

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IVIG is a monthly infusion of antibodies from hundreds of transfusions. If you have certain inflammatory or autoimmune conditions it will make a huge difference in your symptoms. I was almost in a wheelchair and now am walking with only a slight limp. There is evidence that it helps a majority off people with SFN. There is a double blind study going on right now to show how IVIG works on SFN. I have PN in short fiber, long fiber, motor and autonomic nerves. IVIG helps a lot with sensory PN. Even if you don't have the classic symptoms of inflammatory or autoimmune PN IVIG can often help. It is expensive so most insurance limit IVIG to about 15 discrete diseases and where "medically necessary." You need a creative doctor to help prove that IVIG is medically necessary for you.

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Replies to "IVIG is a monthly infusion of antibodies from hundreds of transfusions. If you have certain inflammatory..."

Hi, I'm new and don't know where to introduce myself.

The latest 'thing' I've been hearing about is the use of stem cells to treat neuropathy. I'm doing some research, and would love to hear more about this.

I have profound Peripheral Neuropathy in my legs for over 10 years (disabling,) and severe small fiber neuropathy for 6 years, particularly in my face, lips tongue, fingers (that's where the pain tingling burning stabbing is the worst).

All my neuropathy is the result of my Immune System attacking my nerves. My Immunologist believes this is the cause. Every other possible cause has been eliminated. All of my medical providers are at Duke University Medical Center.

I must wear leg braces and walk with a walker.

AND I have a Primary Antibody Deficiency Disorder and have had IVIG every four weeks for 5.5 years. The IVIG does not affect my neuropathy at all, sad to say.

I take 42000 MG of Gabapentin to control my Small Fiber Neuropathy discomfort.

I have been taking Low Dose Naltrexone for pain for over a year, and it does help. I can't take NSAIDs or any of the codeine related medications.

I also have a bunch of other neuropathies, with the latest affecting my esophagus and small intestines. My saliva and tears system is damaged, my lungs, my bladder, my hearing, PN, SFN, and now esophageal dysmotility, achalasia, and SIBO (small intestine bacterial overgrowth).

And I have very loud tinnitus, with three part harmony in one ear (buzz saw, bee hive, wasps nest).

I look forward to reading the posts here and hearing from others.

Regards, ElaineD

can you send me a link to that study. i'd love to try and get into one.