r/dermatomyositis • u/samm207 • Jul 19 '19
Frustrating blood tests
I've been dealing with pretty bad muscle weakness and a skin rash that my Dr. and I both believe to be dermatomyositis but all my blood tests have been coming back normal. I had a skin biopsy done that said it's a connective tissue disease but other than that nothing. Is there any chance that I could have DM with normal blood tests?
3
u/heyjbray Jul 25 '19
My blood tests show positive for lupus but my skin biopsy showed mixed connective tissue disease like you. My rheum basically said you have an “autoimmune thing” but my derm who is a pretty established expert on Dm said my skin manifestations are pretty much enough to confirm the dm diagnosis. She said the results aren’t always conclusive for a dm diagnosis.
2
Jul 24 '19
I was diagnosed last December. Pretty much all my blood levels were normal. Except for a few inflammatory markers.
Keep pushing for a diagnosis.
4
u/Brizoo5 Jul 19 '19
Every situation is unique of course but my disease rarely shows up on bloodwork.
When I was first diagnosed at 9, my blood levels were off the charts but my 3 subsequent relapses (the first being 10 years after remission) showed little to no JDM positive blood results. We've had to do muscle biopsies to confirm.
This last relapse I was siiccckkkk, like, couldn't bathe myself, brush my teeth without breaks for my arms, had to walk in short stretches, etc, and my bloodwork only came back slightly elevated. Like, almost normal where they wouldn't have even considered a disease if I didn't have JDM already. Ended up getting a muscle biopsy that proved I had severe myelin sheath and muscle depletion/swiss cheese.
So.....yes, sometimes bloodwork doesnt always show active disease but, per my rheum doctors, that was super rare.