Quote:
Originally Posted by 029anser
Deanna
what did your neuro say about a possible IVIG trial for you?
I know you stated that he had hinted at it before
I personally have been helped with it and I feel if a physician suggests it as a potential tx it is worth a trial run
of course, it is cost prohibitive and our wonderful insurance run health care system will usually fight tooth and nail to deny, but it is worth a trial imo if your physician will try to get it "approved" by the insurance gatekeepers
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I did ask him about that, but he didn't seem to think it would be 1) approved by insurance or 2) beneficial. He said since my symptoms aren't really typical or severe, and since he's not even convinced this is what I have, he didn't recommend it. He also didn't think it would be effective. I think he believes my symptoms are stress-related, which honestly, I could believe. But I'd like to know for sure.
I haven't gotten the repeat blood test back on the anti-sulfatide yet, but I did do another B12 test again, just to see what the level was this time. It was 478. Down from almost 700 a few weeks ago. So he suggested supplementing with B12. Still waiting on Vitamin D levels though! Hopefully I'll know something this week.
Since my levels of B12 are just barely normal now, I'm wondering how much I should take. Should I go for the 1000mcg or the 5000 mcg? Is it weird for B12 to fluctuate so much within a few weeks? Thanks all!
Deanna