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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: 12 hours ago | Replies (376)Comment receiving replies
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.
Replies to "I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no..."
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.
Is IVIG a treatment you'll need forever? How often? For how long? Is it expensive is it?
I almost can't walk anymore because of the PN in my feet. It's definitely crippling. I used to be a runner, then a walker of 5 miles a day, and now....it's hard for me to walk through a grocery store. I'm so thankful for being able to order most of my groceries so I just do limited walking in the stores.
Been on IVIG for about 10 years and it does nothing for my neuropathy including small fiber neuropathy. Take it for Low IGG and has eliminated my constant infections though.
After being diagnosed with CIDP my doctor suggested I try IVIG. I have the infusions every three weeks. They seemed to be keeping the symptoms from getting worse for about six months. But for the last two months my balance seems to have improved slightly. I’m hopeful that the improvement will continue to slowly improve.
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Hi ,
Please , can you ask your friend who took the IVIG infusion, Does she has Small Fiber PN or something else ?
Thank you