I have been sick x 2 years, and I Have numbness, weakness, optic neuritis etc... I have had a stressful few weeks and I am late on my IVIG (I get it every 3 weeks, due to this mystery illness), but I just had another bout of optic neuritis followed by new and worse numbness and weakness.. the numb sensations make me want to crawl out of my skin!!! Anyhow, i have muscle atrophy.. its mild, but it's there.. its in my hands, shoulders and butt.. symmetric.. anyhow.. I am the right age for MS (female younger 30's post partum when symptoms started).. had one spot on my brain MRI and questionable on my c spine.. I hate being a mystery!

hi, and welcome to NT,

has your dr suggested an LP?
did they say why they havn't dx'd (diagnosed) you with MS or another illness?
consider getting a 2nd opinion if you think it will help.

I've had a pretty big work up - 2 LP's (1st one normal, 2nd one had some MS markers - elevated protein as well, but i had aseptic meningitis from IVIG.. so everyone has just thought the markers in it were due to the meningitis)..
i've had 5 emg's, and TONS of blood work.. VEP's (which were borderline) etc etc.. now it seems no one cares to figure it out, just try to keep treating it with IVIG.. everyone says it's something autoimmune.. GBS/CIDP has been considered, though the opitic neuritis isn't normal with that.. and then my emg/ncv are normal.. which points away from peripheral causes.... \
\

years ago I thought I had ON and had some strange dizzy spells and the hot water droplet sensations, I thought at that time " i bet I have MS"... but never thought much of it until 2 years ago when after having my son I got incredibly sick and ended up in the hospital with numbness, weakness etc.

I've seen numerous neurologists, rheumatologists etc.. but have been with the same ones the past 2 years now.. university ones.. but not having a firm diagnosis of anything is super mentally exhausting! the muscle atrophy freaks me out the absolute most... whatever I have gets better with IVIG though.. I seem to have attacks and improvements etc..

Hi Bny.. Keep up with your daily mild stretching/exercises to help
your muscles stay stronger. It's hard to do, but, I force myself every
day/twice per day@ 45 min. each. I do mine laying down on sofa.

Sounds like MS to me, keep us informed..

Thank you! I chase around two kids and work full time in a job on my feet... I haven't lifted weights or things like that since it happened as I have to save my energy for totting the kids around and woroking... My muscles so far havent shown that they can build back up yet.. I used to be an athelete, so it's very frustrating

Do any of yall have any atrophy? I have it mildly everywhere on my body