chronic inflamatory demilinating polyneuropathy

• By mpeek
• Posted November 7, 2006 at 8:02 am
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What kind of treatments (medication?) are you receiving? How was your diagnosis confirmed?

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• By psjaquith
• Posted October 13, 2008 at 9:05 pm
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Ditto to peek's question..what sort of medication is in the IV? I was diagnosed with polyneuropathy last year...I have areas of numbness in legs, arms, knee and face and hand. I also have chronic joint pain from inflammation. The inflammatory problems initially gave me diagnosis last year of systemic lupus but this year my lab work showed it was not. I'm epileptic and I have Sjogren's Syndrom the connective tissue disease and cause of several tumors, now post-crainiotomy epileptic.
Fun thing moving to insurance, is I am deemed not being disabled and am to be severed from my Disability pension effective December. So, now I have to fight to keep the check that pays my mortgage. I can't stand for long periods, sit for long periods, and typing is often difficult with hard tissue accumulation on bottom finger side of knuckles. There are neuro issues as well. Supposedly I can find a job that has "light" duties that doesn't require any of the problems affecting me!
Does anyone have periodic problems with insurance companies through Long-term Disability? Mine is supposed to take care of me until age 65 when I am eligible for Medicare. I'm only 52, which I now consider to be Middle-aged.
Not quite sure as to arthritis and bursitis issues in hips, shoulders particularly and knees. That is not a disability either.

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• By Christin
• Posted October 14, 2008 at 7:09 pm
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I'm guessing that you have been using IVIG, which is expensive, for the CIDP so I can understand why you are concerned about the coverage. Your current health insurance should not be affected by your application for disability health insurance (but are you actually applying for disability insurance? through a private policy or through Social Security?)

Assuming that your doctor is giving you the version of IVIG that the FDA recently approved for CIDP, Medicare should pay for the IVIG once you get on Medicare. It is true that Medicare generally does not pay for "off-label" uses, but now that there is a label or indication to use IVIG for CIDP, Medicare can cover the drug for people who have Medicare Part B or Part D, depending on how IVIG is covered in your region once you get on Medicare. The information about the FDA approval is posted on http://www.fda.gov/bbs/topics/NEWS/2008/NEW01884.html. If you have any questions about the coverage, you can send an email to info@plasmaalliance.org or call the Alliance for Plasma Therapies at 888/331-2196.

After your husband retires, will you be able to continue your policy through his employer? Or will you have any other options? again, you can contact the Alliance if you have questions about this.

take care--Christin

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• By Tamyra
• Posted October 15, 2008 at 8:34 am
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I am on IVIG and disability, I have not had any trouble yet. My husband is retired and has BC/BS. The only problem so far is the confusion of who is first, Medicare or BC/BS. My treatments are every three weeks.

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