Life with a Myositis Disease

The laughter and tears that come with living with Polymyositis

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Location: fort worth, texas, United States

Thursday, January 05, 2006

More news of the weird.....

How much stranger could life get? What a silly, silly question....

Went to see my neurologist today, and got some great news, some bad news, and some weird news.

The great news? I was worried about the bills when I realized that this neurologist was outside my insurance. I asked for my balance today and was informed that the MDA picks up the difference. Have I mentioned before how much I love the MDA? Considering my medication co-pays alone run me over $150/month, this was great news!

The bad news? My insurance company denied our attempt to get me back on IVIg treatment. Said it was only 'proven' effective for Dermatomyositis, not for Polymyositis.

The weird news? My neurologist changed my diagnosis from PM to DM.


His point was that my biopsy was positive for myositis but wasn't specific for which since I was already taking prednisone at the time of the biopsy, the fact that DM is more common, the fact that I responded so well to the IVIg but have not to the other treatments, and the fact that I have itchy skin on my hands and my eyelids get red. I had assumed the skin issues were due to my thinning skin, courtesy of the drugs. Good thing I had already asked my PCP about the hives in case the insurance company doubts the sudden appearance of rashes. I also checked with others at TMA - several people didn't have rashes in the beginning and were later dx'd with DM.....

At this point, I'm just confused. I guess it's time to bone up some more on DM......


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