Similar Experience? Update
26F
I started having neurological symptoms affecting the entire right side of my body in February 2025, and they’ve continued to progress. I’ve had extensive bloodwork done along with 2 EMGs on my right arm and leg, both of which came back normal
I took almost 3 months away from this app because I know how easy it is to spiral, and I’ve really been trying to focus on living day by day. But lately I’ve become scared again over the symptom that has continued the most: atrophy
When I brought it up to my neurologist and neuromuscular specialist, they acknowledged they noticed it too, but because my EMGs and bloodwork were normal, they told me it didn’t appear to be anything “life-threatening” and that I didn’t need to follow up unless something new developed
The best way I can describe it is like the entire right side of my body is losing muscle mass, almost as if nutrients are somehow being cut off to that side. It’s not dents in the muscles, it feels more like the muscles themselves are shrinking overall
The most noticeable areas are my lower leg, chest/shoulder, and even my head. My right lower leg is visibly smaller than my left. My right shoulder and breast are also noticeably smaller, to the point where other people have commented on how “sunken in” my shoulder looks or asked if I’m “sick”, which has honestly been really upsetting and scary. My right breast has become so much smaller than the left that I feel like I’ll need to start stuffing my bra soon because it’s becoming that obvious. Even the right side of my head looks more sunken in now, and when my hair is pulled back my face/head looks uneven
My first EMG was done about 6 months into symptoms, and the second was 6 months later. I’ve repeatedly been told that if this were ALS/MND-related atrophy, it would have shown on the EMGs, which I understand logically. But this symptom is still the one scaring me the most, especially because it feels like it’s continuing to progress
I’m not sure if anyone here has experienced anything similar, but any input, advice, or shared experiences would really be appreciated. At this point, based on my neurologists’ responses, I don’t really feel like bringing it up again will change anything but I’m very worried that it will just continue to progress as it’s already progressed so much the past year and some months