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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: Oct 3 7:57am | Replies (491)Comment receiving replies
Still waiting for my remission but it's not coming soon enough! I'm waiting on blood results to see if my existing Small Fiber Poly Neuropathy has simply advanced creating loss of walking ability, muscle weakness, exhaustion etc... or if there may be additional contributing factors. I truly appreciate your input and and am glad to hear you are benefiting from IVIG. Do you mind me asking how long you have been receiving the treatment and how the approval process worked for you? Many good wishes sent your way.
Rachel
Replies to "Still waiting for my remission but it's not coming soon enough! I'm waiting on blood results..."
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Rachel, I developed CIDP symptoms in 2016, but wasn’t accurately diagnosed until late December because doctors kept saying my symptoms were due to multiple pelvic and spinal fractures I suffered in late 2015. (Very few doctors have ever seen a case of CIDP and can’t even define it.) I had to insist on a referral to a neurologist. He has treated a lot of CIDP patients and recognized the symptoms on the first visit. Then I needed the tests to prove what I had. I started IVIG at the beginning of March 2017. Insurance will usually want you to start with the cheapest treatment, which is high dose steroids in this case. I have an ulcer, so that would have killed me. They didn’t argue. After my doctor verified my recurring ulcer and severe acid reflux, they approved IVIG promptly. I believe I would be a quadriplegic by now without it, although I know I will never be “normal” again.