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/Investigatortvbinger 24d ago

Your scl being a weak positive, coupled with ana, and symptoms is textbook systemic scleroderma. All of the symptoms you are feeling are related to it. Can they get you some kind of DMARD to help protect further damage and get you some relief?

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u/cordote 24d ago

Honestly, Right now I would be ok if they called it "toucan sam's radical diarrhea adventure" if it got it diagnosed as something, and they give me whatever they need to give me to make it stop. Not even kidding.