Well... just about a year after I was convinced I had "the lupus" I have been diagnosed with dermatomyositis.
I feel *happy* that there is something actually wrong. How sick is that?
I still haven't seen a specialist but being less crazy feels kinda good.
Not sick at all - just where many of end up when we finally get the right diagnosis. Take care xx
Not sick at all - having a name, a label, makes it "real" and takes away the sense of "is it my imagination" It is a perfectly natural reaction - especially as there are a lot of worse options...
Still not 100% sure what is going on.... but something is! *lol*
My doc put me on prednisone right away so no biopsies were done and bloodwork returned "Ok" pretty quickly so the specialist isnt confident that it is DM.
I have tapered and been off pred since the end of October. But Malar rash has returned, the shawl and V sign while still slightly visible, dont bother me like they did when I had the big flare.
Still have some weakness, stiffness, pain, and fatigue.
Hoping I can get biopsies done before going into a major flare.
*sigh* I feel like such a downer sometimes.
Rashes, weakness in my arms and legs, my hands feet have tight muscles and cramp. I'm easily fatigued.
I have pain in my back, my knees, elbows, hamstring and SI joints... not sure if it's because I am using different muscles compensating for weaker muscles.
I have itchy stinging eyes, blurry vision, but they are not gritty or bloodshot.
My feet get cold and turn purple, possible reynaud???
I have depression and anxiety which have been made worse. I haven't been able to work for nearly a year now.
I dont know what is a symptom, what is just a fluke, and sometimes what is real *lol*
Lupus or not?
Not confirmed Lupus yet
The Lupus Encyclopedia 
If not Lupus... what next?
Not received the 12 week isolation text,is lupus not included in the list?
