Reply To: Anti-MAG treatment update

Hi Ila,

Thanks for your feedback on your IVIG treatments. And, thanks for the “welcome” to the group!

That is an important discovery about your personal experience that stopping IVIG infusions resulted in the disease accelerating. At least you know the IVIG infusions are worth the effort and holding things in check. Best of luck getting Rituximab coverage from Medicare. I look forward to your updates.

Has your neurologist performed any follow-up nerve conduction or other tests during the course of your IVIG treatment to quantify whether it has improved or maintained your condition? Your own test of stopping IVIG twice and finding out the diseased progressed is very significant since you “know” your symptoms best. I had my first IVIG infusion last week and the neurologist wants me to return in 3 months for a “follow-up examination.”

To answer your question, during the last 2 years the neurologist tested my B12 twice and it was well within the normal range.

However, I understand low B-12 can contribute to PN and 3 years ago ordered a bottle of pills from a TV ad that claimed would help neuropathy. At the time, only my feet were numb and tingly so I tried it. Turned out its main ingredient was a mega dose of B-12 and most of it was excreted in my urine! (based on the strong odor).

Happy New Year all!!

Peter