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Myositis UK
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Hello I’m new

Hi I’m getting tests done at the minute by GP for a range of autoimmune and muscle connective disease. However I’m convinced I have dermatomyositis as for years I have red knuckles. They are not raised or cracked just red but do sometimes burn in extreme cold and get cracked. The redness disappears when blanched. Is that normal for gottrons sign or does blanching mean it’s not gottrons sign? I also have redness on the skin of my fingers as well as my knuckles. I’m so confused and worried. My CK levels have come back and are clear so now waiting on autoimmune and anti nuclear blood tests. Has anyone any advice please? Thank you so much and I’m so glad to find this group as Dr Google has only made me anxious!!

2 Replies
oldestnewest

hi. be prepared for a long journey. had a few tests/scans and so on. gone from polymyositis to IBM and back to more tests yet again. I don't care as long as we get it right, to not have IBM though would be just wonderful.

good luck

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Sounds like your GP is on the ball and taking good care of you. It's possible to have a normal CK with Myositis: if you have no muscle involvement your CK would be within normal range.

If your GP does want to refer you have him send you to a Myositis specialist, there is a list on the pinned post, or send me a message where you are and I can advise of the nearest.

Try and limit your time from Dr Google in the meantime!

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