Reply To: Anti-MAG treatment update

Peter
I have had two EMG tests and another scheduled for Jan 4. That is the only objective measurement of the disease progression. I was told that if IVIG is working that you would know quickly -1 or 2 treatments. If you look at charts of success with IVIG, improvement is usually within 3 months. If you have no improvement after 3 months maybe push for Rituxan.

I assume that your initial dose was the double dose(loading dose)as recommended.

I asked about Vit. B 12 because mine is high (serum value) and my theory was that because of MAG it was not being used properly and piling up. High Vit. B 12 can be harmful.

New topic – anyone tried Plasma Exchange to treat MAG?

I was told by several neurologists and other doctors that you are your own best advocate. I think a doctor getting annoyed at your questions is a bad sign. So little is known about this disease.
Also, I thought “slowly progressive” meant one barely noticed it. No so in my case. I have been obsessive about this disease for over a year, trying to learn everything about it. If I can provide any clarity, please let me know.
Ila