NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Am I wrong to push for IVIG? (https://www.neurotalk.org/peripheral-neuropathy/232979-am-wrong-push-ivig.html)

Rancar 02-25-2016 02:43 PM

Am I wrong to push for IVIG?
 
I'm sure this will sound familiar to many of you, but three weeks after receiving the flu and TDP vaccines in 2014 I started getting full blown PN. Burning sensations, pins and needles, hands and feet etc.

Over the next year it slowly got better, with periods of flare-ups lasting a few days, followed by the lovely pain of nerve regrowth. I'm left with some residual nerve damage that is likely to never heal and an extreme sensitivity to cold in my feet.

However, I do continue to get flare-ups, especially if any major trauma occurs to my body. Like clockwork I got bad flare-ups three weeks after gallbladder surgery, and three weeks after a bad bike accident that sent me to the ER.

Neurologist considers this part of the auto-immune deficiency, doesn't know what I have exactly other than "it's really rare". I asked for IVIG since I'm in my 30s and want to do anything I can to avoid being severely disabled in my 60s.

My Neurologist wants to let my body continue to heal up from the flare-ups on it's own and only start IVIG once it takes my body a week or longer to deal with a flare-up.

My understanding is that each time my body attacks my nerve endings and "heals back" there is some damage and eventually I will lose motor function and feeling.

Am I wrong to push for IVIG now in the hopes that it delays the progession of the disease, or is my Neurologist right to urge caution and only do IVIG when my body starts having a harder time healing itself?

Healthgirl 02-25-2016 07:25 PM

In desperation to have my strong healthy relatively young body back, I tried to push for it. I was denied as my high ANA is not enough to get my insurance to cover it on the basis of autoimmune disease. I don't think you are wrong to try.
Like you, I also feel that my nerves heal and then then are attacked again.
No cause found for me either.

en bloc 02-25-2016 11:28 PM

I have not heard of IVIG being helpful in toxic neuropathy...which is basically what you are describing with PN from vaccines. I'm not saying it wouldn't work, but I haven't read about it being successful for this. Then again though, the vaccines work based upon immune responses and IVIG helps to modulate the immune system, so in theory it might help. Can't hurt to ask for it.


All times are GMT -5. The time now is 08:35 PM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.