Quote:
Originally Posted by P8ntedpny
Hi. I see this post is not newer, but has anyone gotten the IVIG for their neuropathy? I am already receiving this (since 2002) for any immune system disorder called Common Variable Immuno Deficiency. How have your responses been? I was just diagnosed today with Axonal Poly Neuropathy. Is this also related to ALS? I have a 1st cousin who has ALS...now I am freaking out!
Thanks, Kathy
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I had one round of IVIG and it didn't help, but maybe I needed to stick with it because neuropathy in legs and feet started about 10 days after getting a flu shot and pneumonia vaccination both on the same day.
That was in 2015. Two or three different Neuros gave me a diagnosis of an idiopathic sensory-motor axonal polyneuropathy. Unfortunately this has caused muscle atrophy in my legs and feet and has progressed quite rapidly. I am now needing to wear leg braces to walk which is a real bummer.
I also was worried about ALS; however, many neurologists have reassured me that ALS is very different from an axonal polyneuropathy. They suspect Charcot Marie Toothe disease to be more likely (i.e. a hereditary neuropathy). I do take high dose b12 which is recommended for ALS sufferers. I do the b12 because at least I'm doing something to maybe slow the progression. I also believe that the incidence of hereditary ALS is very low, so better not to worry about this. Anxiety makes neuropathy pain 10x worse!