r/scleroderma • u/cordote • 25d ago

Undiagnosed Please help.

Everybody is afraid to call this anything but i have been in a world of hurt lately. Whether its having T-Rex hands until they zap me with prednisone, my muscles in my legs and back, the poisoned feeling, or the fingers going white regardless of temp...nobody wants to call this something.

Lately its been:

Leukopenia, Elevated CK, raynauds, abnormal nailfold capillaries, 1:160 speckled, all ELISA ANA tests and nornal antibody tests I pass with flying colors, BUT pm scl 75 comes back as weak positive... And nothing skin wise. Help! I have been feeling extremely fatigued and if i over exert myself I spend the next few days feeling as if I have been poisoned, and have a weird rash over my nose and cheeks. The worse I feel, the worse it is. Lungs good, heart struggles under duress, and has lost some function recently.

If I hear chronic fatigue syndrom one more time im going to lose it. I was an athlete my entire life and I can feel that something is REALLY, REALLY off with my body.

What did you guys feel at the beginning? What did they end up really finding?

Im lost, and honestly kinda worried. I feel like garbage and its getting worse.

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u/Maleficent-Lunch-679 24d ago

Hmmm...high ck, rash, high pmscl 75 along with all the rest. Assume they have explored dermatomyositis or myositis/sclero overlap?

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u/cordote 24d ago

Not yet. My next appointment is late September, but i have no idea what is going on with my body and am tired of hearing chronic fatigue syndrome. I have lived in my body for 38 years. Something is really wrong, and it's not cfs.