Update on Dermatomyositis DX

    • Anonymous
      November 11, 2012 at 8:43 pm

      Hi, folks! Hope this finds you all well and safe.

      Well, my family came through Sandy’s wrath with very little damage done to our home and property and were even able to help out neighbors who lost power for extended periods. However, as we were gearing up for the hurricane, I noticed an issue closing my lips around a spoon. A look in the mirror revealed a drooping eye and lopsided smile: Bell’s Palsy. The facial muscles on my right side are paralyzed. Already improving on prednisone and antivirals, thank goodness, but it’s awkward and embarassing.

      Still not sure what caused the Bell’s, but in the meantime I’ve been moving on with all the tests my rheumatologist has requested to confirm the dermatomyositis Dx. The results we’ve been seeing show a mixed picture — it would be too simple to have a clear cut set of results leading to a definititve answer! — making it difficult for my docs to decide on how to treat me. With all the overlap in symptoms, it’s impossible to tell what is the CIDP, what the cutaneous lupus (if I even have it) , what the dermatomyositis (if I even have it)….

      So I reached out to a colleague for advice. She had the name and contact information for a dermatomyositis/lupus specialist in Philadelphia and got me an appointment the very next day. The new doc, another dermatologist for my collection, was very nice and said that she sees both cutaneous lupus AND dermatomyositis features. She requested more tests (sigh), prescribred an additional antimalarial medication, and plans to work with my neuro, rheum, derm, opthamologist, and primary care physician to sort everything out! She thinks that I may never actually have had CIDP in the first place, and that the symptoms I have had were caused by dermatomyositis all along. If she’s right, I may be able to stop getting IVIg. (She called IVIg “a life sentence – once you get on it, you never get off.” A very different perspective for me, who has been so grateful to feel better with it!)

      So there is some potetntial for good news in all this. But it’s hard to feel too optimisitic when I’m so bone-crushingly exhausted. I thought I knew what it was to be tired, but the last few weeks have schooled me. I’m too tired right now to get up out of this chair and go take a nap. Such a slug!

      Take care, all!