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giarc60 (@giarc60)

IVIG Infusions

Neuropathy | Last Active: Oct 1 5:12pm | Replies (119)

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@arcticmark

I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face…) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.

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Replies to "I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no..."

Hi ,
Please , can you ask your friend who took the IVIG infusion, Does she has Small Fiber PN or something else ?
Thank you

artic have you had more iivig since oct and do do you feel?

@arcticmark, @albiet, Good morning. I am responding to post by @arcticmark about IVIG and Neuropathy. You can search yourself for more…..in the search field at the top of the page, you can enter (IVIG and Neuropathy). Let me know if you more. The other two on this page had one and two IVIG treatments. Neither reported finding any help with the SFN symptoms. Let us know what you find.

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