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General
1

Hello everyone,
I was diagnosed with ADEM in Feb 2013 at age 38. I originally lost my ability to walk or feed myself. I was hospitalized in Feb. but my symptoms started at the beginning of Jan with headaches. I was in the hospital for 3 weeks. I have lesions and inflammation in my brain wit a high white blood cell count in my spinal fluid. Put on high doses of Prednisone. After several months of rehab I was able to walk on my own. I did have weakness on my left side.

I came off the prednisone and had a relapse. They found a lesion on my spine. I had Bell’s Palsy and I was hospitalized for a week and put on IV steroids for 5 days. I was put back on high doses of prednisone, 1500mg CellCept and was able to go back to work as a teacher in Aug 2013 walking in my own.

I returned to work, but when I came off the prednisone I had to stop. I was in lots of pain and felt sick and tired. I developed vertigo, but all my inflammation and lesions were gone. I went from walking on my own to having to use a walker again. I developed something called Lack of Proprioception. I went on 10mg of prednisone and the pain went away.

I got a second opinion and we checked for Neurosarcodosis. I had to come off the prednisone again. I got really sick. I tested negative for that. Instead of going back in prednisone they increased my CellCept to 3000mg a day and I got on Lyrica.

I am still struggling with balance, fatigue, numbness, weakness, and walking issues. I am so glad that I found this group. Not many people know what this is and how to deal with it.

In my case I have no idea what caused it. The doctors can’t seem to find an answer either to that question.

2

Our cases seem very similar. I was diagnosed back in April 2014. I am 36 years old and have been having I’m going issues ever since. I have had a recent relapse in February of this year. I actually was just hospitalized this past week and just got out today. I received five series of I V I G. Unfortunately I have been in a wheelchair since 2014. I am still struggling with my balance and terrible ataxia. I just recently joined this group to find help and support as well. For me this seems like a never ending journey with no positive results.

3

I am actually in the process of getting a wheelchair for longer distance walking and so I can actually go places I haven’t been able to go. I am currently off the prednisone and the combination of CellCept, Lyrica, and rehab have helped. I am not in anymore pain and feel like I have more energy than I did when I was off the prednisone.

CellCept has less side effects than prednisone has and was recommended by two different doctors. I wish I had more positive things to say. I don’t see the improvement like I did before, but my muscles are getting stronger which should help. I’m hoping I can get this balance thing under control. For now, I just do what I can.

I am just glad to see that I’m not the only one and have people that understand. I had resorted to not worrying about why it happened and just focus on getting better each day.