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New Kid on the block with several questions

Neuropathy | Last Active: Jan 18 5:53pm | Replies (16)

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@jan64

Can you tell me a bit about your experience with IVIG? I am waiting for results of tests that went to Washington University. I have SFN that came on suddenly. My neurologist told me about the negatives of IVIG; it seemed like he was discouraging me, but he said he would also go to bat for me with insurance company if immune related cause is found.

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Replies to "Can you tell me a bit about your experience with IVIG? I am waiting for results..."

I was on IVIG from age 10-18 autoimmune disorder. I am taking panzgya. It helps with my balance and dizziness. I am going to talk to my neurologist maybe about rotating it with gamma grad. I have severe motor neuropathy and gamma grad treats motor neuropathy. On the panzyga it stops the foot and leg pain for me. Truthfully. I am really a hard IV stick and I would like to use subq instead of IV. I don’t know if gammagard works as well as panzyga. Problems- drink 100 ounces of water day before. during and after few days later helps with side effects. Someone told me about the water I did not know about the water the first time. Migraine 9 days and my kidneys hurt. Mouth broke out in hives. Afterwards I get nauseous and can just drink a shake. It goes away. It is worth it to me to get rid of the dizziness and balance problems and my feet not hurting. Even though I have lost feeling in my legs feet up to my knees and hands up elbows it’s worth it for me. I am a retired nurse I begged to be put on it. I took in all the documents and showed the neurologist. I take it twice every week. Other than the IV for me it has made a big difference. Each person is different on what works for them.
I know people that have tried several types. Avoid IVIG with sugar in it sucrose or may be a different name. Can cause severe kidney problems use the IVIG without it.