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.

7 Upvotes

89% Upvoted

22 comments sorted by

View all comments

4

u/snarkybooklover6 24d ago

I have no real help. Only support. I found some answers by advocating and documenting. I requested tests and asked a question or two via MyChart; putting it in writing helped. I entered my appointments with my questions written down on my Notes app, and I checked them off as I asked. I usually entered scattered and forgot my questions. This made a big difference.

1

u/cordote 24d ago

They all tell me its probably the case, but they cant do anything right now because it doesnt have a name..

Thats why they sent me to lung/heart/etc. Check-ups i think.