Recovery timetable

Hello everyone..this is my first post. I am hoping to hear from other people recovering from ADEM on how their recovery is coming. Its been about 16 months since the initial onset and diagnosis of ADEM. which left me paralyzed from the waist down. I have since recovered , not fully, but I am for the most part out of the wheelchair. I can walk, not very well and my legs and feet are still very numb and my bladder is still dysfunctional. I am just wondering if this is it? Or can I expect to get better in due time?

I will certainly appreciate anyone's reply, advice, or suggestions.

thanks....Sisto

Hello Sisto,

I'm glad you decided to post. You'll probably hear this a lot: it just depends. Or, it varies person to person.

My walking came back fast, but now when I overdo it (which doesn't take much), I find myself wobbly or dizzy. And sometimes in the morning, I have to revert to using my walker or my cane for awhile until all the parts cooperate.

I wish you luck and a speedy recovery. Please keep us apprised and ask anything!

LauraK

Is there any meds that any Doctors know about?

Hi Sisto, I am 2 years post-ADEM and I had paralyzing symptoms from my chest down affecting the bladder. I always had symptoms down my arms into the hands. I lost all function of my hands and had to learn to use them all over again. That took 6 to 8 months. That eased up after my hospital stay of 4 1/2 days. My vertigo re-appears once in a while when I'm stressed. I still have symptoms in my hands, which I believe will stay. I am able to use them again though. Compared to that spring, I am doing well. I have some minor cognitive issues, but I am coping well. I try not to stress, not always easy, exercise, and try to eat healthy and take my vitamins. Like Laura noted, we all seem to have somewhat different symptoms and heal differently. The one constant...healing is a slow process. I tell everyone, celebrate each and every improvement, no matter how small and try and stay positive. If you have any questions or simply want to vent, post it. We're all here for the same reasons.

Lynn

thank you Lynn for the response..Hearing you say that healing is a slow process is kind of good news to me. I can at least imagine that my recovery isn't finished and that six months from now I will hopefully be a bit better than I am now.

Lynn said:

Hi Sisto, I am 2 years post-ADEM and I had paralyzing symptoms from my chest down affecting the bladder. I always had symptoms down my arms into the hands. I lost all function of my hands and had to learn to use them all over again. That took 6 to 8 months. That eased up after my hospital stay of 4 1/2 days. My vertigo re-appears once in a while when I'm stressed. I still have symptoms in my hands, which I believe will stay. I am able to use them again though. Compared to that spring, I am doing well. I have some minor cognitive issues, but I am coping well. I try not to stress, not always easy, exercise, and try to eat healthy and take my vitamins. Like Laura noted, we all seem to have somewhat different symptoms and heal differently. The one constant...healing is a slow process. I tell everyone, celebrate each and every improvement, no matter how small and try and stay positive. If you have any questions or simply want to vent, post it. We're all here for the same reasons.

Lynn

thanks Laura for your reply guess I just need to be patient with my recovery and not worry about the "whatever comes back the first year is all you'll get" theory I hear so often from doctors and therapists.

LauraK said:

Hello Sisto,

I'm glad you decided to post. You'll probably hear this a lot: it just depends. Or, it varies person to person.

My walking came back fast, but now when I overdo it (which doesn't take much), I find myself wobbly or dizzy. And sometimes in the morning, I have to revert to using my walker or my cane for awhile until all the parts cooperate.

I wish you luck and a speedy recovery. Please keep us apprised and ask anything!

LauraK

Hello, I was wondering is there any meds given for any ones wobbling (paralyzing symptoms)?

I have been offered various medicines but mostly for cognitive and emotional symptoms. I have not asked nor been offered meds for the wobbling.

For me, it usually takes slow steady movement to get parts working. I did physical therapy for quite awhile which I think helped. At the very least it gave me exercises to try when I get wobbly.

LauraK

Hello guys my name is Mike, I have been diagnosed with ADEM in 2005 I was in my early 20th I couldnt walk, my muscle were very week but then I recovered not fully. And decided to continue my education graduated in 2009. My memory is really bad specially about places I went and people I met I couldn't remember it at all. My doctor put me in this meds called Copaxone but I stopped I really don`t see any benefit from it. I still have balance issues, I walk but I get tired wobbly or dizzy.easily. I have an issue with my left leg I seem to be dragging it a lot lately. I have a baby girl of two years old I wish I could run and play with her more and more, like I said my left leg is horrible. I`m hoping they come with some Medication to gain the strength again and walk properly as I work in the hospital and sometimes is very noticeable. Today for example it was a difficult day I get very frustrated at times.I want my athletic self back please help if you guys know any medication. Thank you and God bless you all.

Mike,

I have the same problem with my left leg. I walk with a cane because my balance is bad with my left leg. It is heavy. I believe my muscle in my leg is dead. If you hear of any way to help please let me know too.