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- 16
Hi everyone,
I need some advice regarding IVIG and insurance. In December of last year, I had a hepatitis B vaccination that triggered a number of life-changing symptoms... muscle fatigue and pain primarily localized primarily to my triceps, shoulders, and quads, weak knees/legs, slight burning sensation sporadically around my triceps and forearms (like icy/hot), low freq. muscle vibrations at night, mild muscle spasms, cognitive/desensitization issues, subtle skin changes (chicken pox scars?, slight mottling of areas of weakness, etc.) and possibly PEM (I've not tried exerting myself since last December). I'm able to work, albeit at 50-60%, and I come home and don't do anything the rest of the day. I went from working out 6 days a week/running marathons to no physical activity, no social activity, and no extracurriculars whatsover. As you all know, it's very heartbreaking. Things have not gotten better or worse.
Eerily enough, my brother had a very similar reaction to the flu vaccination three years ago and missed 9 months of med school (possible genetic component here!!). He was diagnosed with small fiber neuropathy and MCAS. He referred me to his dysautonomic neurologist, Dr. Blitshteyn, who recommended that my first course of action should be a 5 day IVIG among other recommendations/tests, via phone consult.
I saw an immunologist yesterday and unfortunately, he told me that in order to get IVIG covered by insurance, I would need to get a punch biopsy to confirm a diagnosis of small fiber neuropath or else this becomes a much more difficult situation for myself. He stated that CFS alone is not a "valid diagnosis" for IVIG as the treatment for this condition is controversial/inconclusive. I was already planning on seeing a neurologist for this next week. If I do not end up having small fiber neuropathy.. am I shit-out-of-luck with my insurance company? I expected IVIG to be $5000-6000 which I could possibly cover, however, my immunologist is telling me it would be roughly $15,000 for a 5 day course. That's insane!
Any advice in the event this happens?
-HG
I need some advice regarding IVIG and insurance. In December of last year, I had a hepatitis B vaccination that triggered a number of life-changing symptoms... muscle fatigue and pain primarily localized primarily to my triceps, shoulders, and quads, weak knees/legs, slight burning sensation sporadically around my triceps and forearms (like icy/hot), low freq. muscle vibrations at night, mild muscle spasms, cognitive/desensitization issues, subtle skin changes (chicken pox scars?, slight mottling of areas of weakness, etc.) and possibly PEM (I've not tried exerting myself since last December). I'm able to work, albeit at 50-60%, and I come home and don't do anything the rest of the day. I went from working out 6 days a week/running marathons to no physical activity, no social activity, and no extracurriculars whatsover. As you all know, it's very heartbreaking. Things have not gotten better or worse.
Eerily enough, my brother had a very similar reaction to the flu vaccination three years ago and missed 9 months of med school (possible genetic component here!!). He was diagnosed with small fiber neuropathy and MCAS. He referred me to his dysautonomic neurologist, Dr. Blitshteyn, who recommended that my first course of action should be a 5 day IVIG among other recommendations/tests, via phone consult.
I saw an immunologist yesterday and unfortunately, he told me that in order to get IVIG covered by insurance, I would need to get a punch biopsy to confirm a diagnosis of small fiber neuropath or else this becomes a much more difficult situation for myself. He stated that CFS alone is not a "valid diagnosis" for IVIG as the treatment for this condition is controversial/inconclusive. I was already planning on seeing a neurologist for this next week. If I do not end up having small fiber neuropathy.. am I shit-out-of-luck with my insurance company? I expected IVIG to be $5000-6000 which I could possibly cover, however, my immunologist is telling me it would be roughly $15,000 for a 5 day course. That's insane!
Any advice in the event this happens?
-HG