I found this searching on the web, I know it's an old post, but....here's hoping someone reads it.
I was dx'd w/M.S. in Jan. '13, and I've lost 65lbs. since then. I think most of it is fat, but there's definatly muscle mass too.
I am NOT a small build, I'm kind of like your typical burly man, grizzly bear kind of guy, 6'5", was about 280, which was pretty heavy even for me, but now...I'm 215 and weirdly skinny. People say I "LOOK GREAT! what are you doing?!" oh you know...getting M.S. feeling like shit. The usual.
My appetite can go forever without wanting to eat, which isn't normal. And then right back to feeling like I'm hungry all the time.
Some days are better than others, then somedays walking up the stairs and I'm drenched in sweat. I also have disc disease, Syringomyelia, Chiari Malformation from trauma, not congenital, and Ehlers Danlos Syndrome type 3 hypermobility.
I was an athlete when I was younger, I've been this light before, but w/a 33" waist and JACKED with muscle. Now I'm a 36" waist down from 44" and absolutely NOT jacked with muscle. I make sure I get ensure w/skim milk on the days I just can't eat, and when I can I do eat. But I can't gain weight. I can put it back on, for a bit, but I always lose more, like three steps forward, five steps back. I lost 7lbs in one day once. I even lost weight DURING the day, as in usually we are lightest in the morning? But I weighed less after the end of the day.
all my clothes don't fit. and I'm wondering if I'll go back up in weight.
I'm on copaxone, and monthly Solu-Medrol drip, plus a slew of other medications for all of my other issues/medicals.
Not sure it this helps or if someone can help me?