Thank You for taking the time to reply to me. I really appreciate it. It’s really been a whirlwind and I’m still not entirely sure what’s happening. There’s so much randomness and with all the meds and my crappy immune system I cannot always tell what’s from what. I also constantly agonize that it just all in my head:
I have Atypical Insidious Onset Dermatomyositis. It was an absolute nightmare to come to that Diagnosis as it is considerably rare, not to mention statistically speaking, at 30, I’m either too young or too old. I also have some of the less common complications- definitive esophageal and pulmonary, with possible cardiac involvement (My last two EKGs were abnormal, but non specific)
The Distal Weakness, which came after all the rest, howeve, is what seems to be worrying them. It’s unusual and even more so now that the Proximal Weakness seems to responding quite well to all the medicines.
On the flip side they actually seem to be progressing.
Also they apparently look a bit strange too. I can see what they’re talking about, but I didn’t really notice it before or anything. I guess bc It’s not really all that bad.
The weakness might’ve preceded the EMG, but before we knew the actual muscle was abnormal we weren’t sure it was true weakness. It is. So next EMG is gonna be now instead of June with all the bi-annual cancer Screenings. They also requested a specific Dr who we were told is the ALS Dude for the Philly VA, tho maybe/hopefully that was just his version of some sorta fun fact.