Has anyone been diagnosed with adem with my symptoms ? If you would just take few minutes and view my profile and read my symptoms I’ve had last few months I would appreciate it . I would really love to chat with someone in my age category .
I'm new to this site. Where/how do I view your profile?
Laura, if you click on someone's profile photo (or butterfly), it will take you to their page.
My symptoms were (as I'm sure you will hear a lot) similar but different. My initial symptoms were blinding headache, followed a day later by inability to walk or urinate. The next day my speech was slurred and I had burned down my left arm. When we got to the second hospital (the first one sent me home telling me I had a virus...) and they put the blood pressure cuff on my arm, I thought I would explode. I even took off my wedding ring as it felt like a lightning rod. The next two days are empty, memory-wise, but I understand there were a number of MRIs, CT scans and a spinal tap. I was receiving a load of steroids for the swelling in my brain. By Wednesday my sight was somewhat back (I had Optic Neuritis) and I could talk, but apparently my typing/texting was incoherent. I managed to shuffle on a walker and the numbness from my chest down dissipated. I'm still missing vital communication to my lower extremities, noticeable when the first doctor sent me to physical therapy too early, meaning I cannot tell when I've overdone it. My lasting struggles are with extreme fatigue, memory loss (from the year prior and day-to-day), word choices especially when I'm tired and what my new neurologist calls "emotional incontinence" - I cry or rage or laugh when I'm stressed. Oh, and I've lost all of my diplomatic filters. I curse like a sailor now when irritated - and that's VERY new.
Laura , thanks for taking time to tell me about your symptoms . I get irritated when I’m trying to say something and know what it is but just can’t get it out. Like I know what I want to say , but can’t get it out . See like now, I know what I want to say but can’t seem to put it into words. Uggg it is frustrating and I’ve had moments to where I just cry. I’m just so thankful , because it could be worse . Sometimes I say stuff , and be like " yes I know , I confuse my self " & laugh it off . Before I realized I had something wrong with me I would get extremely mad and say stuff that didn’t even make sence . I didn’t want to be mad but couldn’t stop it . I would even say to my.husband.and apologize . I don’t curse anymore , I seen more calm just knowing that there is something wrong with me and now I can get it fixed or at least get it under control .
I think that's the best advice. Allow yourself to be stuck or say something wrong. I found going to a counselor has helped. Once I finally acknowledged I had a life-altering illness (I likened it to cancer as you just don't know what's going on), I thought I needed some tools for dealing with day-to-day life. The biggest thing I've taken away is to stop. breathe. and try again. I may not say exactly what I wanted to, but berating myself for getting stuck certainly made it worse.
LauraK
My boyfriend is 39 and currently in an induced coma due to brain swelling. I have written about his story on my profile and a discussion. Where you just diagnosed with ADEM and have these symptoms or did you have swelling, hospital stay, and induced coma also?