Reply To: Anti-MAG treatment update

December 29, 2017 at 3:34 pm

Hi Heidi,

I am interested in your ankle-foot orthotics. Do you have a link or brand name? I am at the point where I will soon need a cane to help my current daily “balancing act” unless the IVIG I just started stops progression. I have some foot drop, and my ankles seem “loose” like the muscles and tendons are atrophied. When I walk on uneven surfaces like loose sand on the beach or uneven dirt, my ankles start to “roll” sideways. Do your ankles “roll” easily also? I have fallen down twice from this. One of the neurologists suggested leg braces from the knees to ankles. So your post about your ankle-foot orthotics is timely! Thanks for any info you can provide.

I also take a multi vitamin and fish oil. I have been taking glucosamine for 15 years after I had ankle surgery. I have no idea if it helps anti-MAGers to maintain muscles and tendons but who knows. I asked my neurologist about preventing muscle atrophy and was told if nerves are not conducting normal electrical impulses to the muscles, that is like a motor not getting enough electricity so it won’t work properly.

I agree with you on Ila’s question about the plasma exchanges. I bet this works to filter out the bad antibodies but it would need to be repeated indefinitely and has risks, and is no doubt costly. I just saw the first bill for my IVIG and so happy I have a relatively low annual maximum “out of pocket” expense for my insurance.