I have not been able to figure out how to post except for this, please excuse me if this is not ok.
Diagnosed 2-97
The main medication I have been on the last 5 years is IVIG. It has been a life saver . Is anyone else familiar with it?
I am extreemly interested in CCSVI as it seems to me a genuine missing piece.
PS Hope I can find any comments and learn to navigate here, not sure where this will end up ... Please help!
The people on this site are astonishing!
anyone on IVIG???
IVIH
took it for yrs, LOVED it - felt like super woman
came off when I learned how risky it was - doing FINE w/o it
L
came off when I learned how risky it was - doing FINE w/o it
L
Gave up on this post as there was no reply and now for some reason got an email.LR1234 wrote:Thinking of starting IVIg.....found this post.
Is it that risky?
I don't know what risks Imacalus is referring to . It is a pooled blood product . They say the risks of viral infection are extremely rare given the processing. I would chose that over any "MS" meds any day. I was on it for a total of 5 years as well , with interruption by my health insurance. It helped me dramatically till i was switched brands. Actually was able to exercise and rebuild muscle.
Had procedure for CCSVI July 2010 and stopped IVIG. Had great results !
Cool, maybe its worth a shot then????
Slightly worried about the CJD risk though...apparantly the screening isn't so great with CJD as its a protein or something.
Also worried about my reaction to it.
Did you have any relapses when on it? Did any of your symptoms improve?
I have heard they have changed the solutions. My dr was telling me they lowered the sodium and have added other stuff to it. I hope its still as good.
Slightly worried about the CJD risk though...apparantly the screening isn't so great with CJD as its a protein or something.
Also worried about my reaction to it.
Did you have any relapses when on it? Did any of your symptoms improve?
I have heard they have changed the solutions. My dr was telling me they lowered the sodium and have added other stuff to it. I hope its still as good.
Re: anyone on IVIG???
I took IVIG for many yrs, it helped. Then insurance stopped covering it. Husband had to go to his work HR and got IVIG covered again. So I have been back on it for 5 mos now. Recently started high dose vitamin D3. It is helping a lot.
Look into it. I can send you some info on it. I stay away from milk products and calcium. Ck kidney/blood every 6 Wks
Look into it. I can send you some info on it. I stay away from milk products and calcium. Ck kidney/blood every 6 Wks
Re: anyone on IVIG???
Hi,
I think what they are targeting are your NMDA receptors. The IVIG (Intravenous immunoglobulin ) is a product made from many donors that aims to modulate your response to antibody production. Effectively normalize it. There is some evidence it works across a range of autoimmune diseases. It is an infusion of IgG antibodies. If you are IgA deficient it can create problems.
Good luck with it.
Regards
I think what they are targeting are your NMDA receptors. The IVIG (Intravenous immunoglobulin ) is a product made from many donors that aims to modulate your response to antibody production. Effectively normalize it. There is some evidence it works across a range of autoimmune diseases. It is an infusion of IgG antibodies. If you are IgA deficient it can create problems.
Good luck with it.
Regards
- Vivianne766
- Family Elder
- Posts: 190
- Joined: Sun Mar 07, 2010 3:00 pm
- Location: WNY
- Contact:
Re: anyone on IVIG???
My neuro was on vacation. Heard about IVIG from the nurse for the first time. Wonder if it works for progressive MS.