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Has anyone had IVIG Infusions for Neuropathy?

Neuropathy | Last Active: 4 days ago | Replies (422)
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@roslyn2314

I have 2 Neurologists. Both professors, with completely different ideas on IVIG. I was diagnosed with SFN then LFN was added then It was changed to CIDP …I suspect to get IVIG funded. Who knows .Anyway Prof 1 prescribed Gammunex 300ml every month . I did 7 months then reacted badly to it and had to have 10 days of cortisone to settle things down. Still can’t walk properly and my fingers are still going numb like my feet but it did make me feel just slightly better in myself.
Prof 2 said it wasn’t worth the risk as it changes the viscosity of your blood and too many people were having strokes and don’t do it .. He offered no other treatment so naturally I jumped in for the 7 months IVIG with prof 1 to try and control this insidious disease .
Can’t get to the bottom of who is right here but prof 1 said it could help CIDP but would have no effect on SFN
My GP just rolls his eyes and says bloody neurologists they never agree on things. Guess it depends on their training. My advise is if there is nothing better give it a shot. BUT hydration is the key. Day before start drinking and keep up copious fluids till 2 days after your infusions. Make sure your clinic has a good reputation and your neuro monitors the procedure . Good luck. I hope it helps if you run with it

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Replies to "I have 2 Neurologists. Both professors, with completely different ideas on IVIG. I was diagnosed with..."
artemis1886 | @artemis1886 | May 1 12:03pm

IVIG therapy, steroids and immunotherapy, stem cell transplant along with plasma exchange is the treatment for CIDP according to the medical journal I have been reading since they (the doctors) want to test me for CIDP. Reading up on this I have tested positive for over four years for the EBV. GBS results from problems with EBV. EBV- Epstein bar virus
GBS- Gullian Barre Syndrome
Once started on iVIG therapy you are supposed to remain on it. IVIG therapy helps your immune system. You quit IVIG therapy it is supposed to progressively get worse fast according to the medical journals I have been reading. I was on IVIG therapy from 10-18. Dr Oaklander a research neurologist in Boston told me I would not be in as bad shape today if I would have remained on IVIG therapy.
Current diagnosis
SFN, CAD (cardiac autonomic neuropathy), severe sensorimotor peripheral polyneuropathy.

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jfn | @jfn | May 2 5:55am

Hi roslyn2314,

I drink 150 ounces of water the day before, the day of, and the day after. I also do cranial sacral therapy within 3 days.
My treatment last weak went awry as my port did work properly. I truly think operator error. I had to have a port study, not as bad as I thought, and I foundout on my 3 hour drive home, that my Ivig was rescheduled for today. Arghhh, not enough time to drink all the water!
I am grateful for my Ivig, I need it for more than neuropathy. It has kept my neuropathy in check for the most part, eating wrong, stress, allergies and my just plain idiocy on my part contribute to be acknowledged by the way my neuropathy feels on any given day.

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