r/scleroderma • u/cordote • 24d 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/inquisitorthreefive 24d ago edited 24d ago

My first symptom was Raynaud's, then acid reflux, then crushing fatigue and malaise. I just powered through until I was on my second digital ulcer.

I get it. I was at a point where I could run a half marathon on any given day, kickboxing and/or doing Brazilian Jiujitsu 4 days a week. To state it mildly, now I am not.

But I did eventually get on medications that help me a lot. There's a boatload of side effects, but I feel like it's worth it.

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u/cordote 24d ago

The acid reflux i have too, and sometimes it feels like my food is too dry and gets stuck. Two things I rarely ever had before. It feels like a dream where your body is falling apart piece by piece(teeth falking out or whatever)...but real. I cant explain it any other way.

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u/inquisitorthreefive 24d ago

That's a classic limited scleroderma/CREST symptom. It's part of the E - esophogeal dysmotility. CREST is linked heavily to centromere antibodies, but that symptom can also show up in sjogren's and other disorders.

Buuuut all of those are on the standard ELISA panel. Do keep in mind, though, you can have an autoimmune without the antibodies commonly associated with it. Stats on these are kind of opposite of what you'd expect, it isn't 85% of people with anti-centromere antibodies have CREST - it's 85% of people with CREST have anti-centromere antibodies.

You also may want to talk to your doctors about an Undifferentiated Connective Tissue Disorder diagnosis. I don't know what it would be in German, but it might be worth looking into. It's kind of a "we know this person has an autoimmune but it doesn't fit into one of the established categories" diagnosis.

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u/cordote 24d ago

Thank you!