I just joined as of yesterday as I was looking Online for a group to look for support surrounding ADEM. I am 36 years old and was diagnosed in April 2014. I was as healthy as can be until February 2014 when I started just having flu like symptoms. It all hit rock bottom on March 31, 2014 when I was home sick from work and my wife called to check on me but I couldn’t recognize who she was. My brother then called and I did not know him either. They both came to check on me and I was very combative with them. They called 911 and March 31 was the last day I was home until August 2014. Through those months I was in the five different hospitals in the Chicago area along with mayo clinic in Minnesota. I had steroids plasma exchange I V I G and a dose of infusions. I finally got stable in August 2014 and was discharged from inpatient rehab/therapy. I thought I would walk out of therapy but I remained in a wheelchair and still do to this day. I am currently trying to walk again by doing therapy. I am out of work and trying to be independent which I have found to be very difficult.
I get angry very easily and it is rough on my wife and my relationship with friends and family. I have terrible ataxia and a constant burning sensation in my arms and hands. If anyone has any recommendations on what could help with the burning in my hands and arms I would greatly appreciate it. I have accepted The fact that I am in a wheelchair and I am trying like hell to get out of it. The pain in my hands and arms along with the ataxia makes it very difficult though. Thank you everyone and I look forward to speaking with all of you
Steveo - Welcome to our site and thank you for posting a Discussion topic. There are many older and younger patients on this site, and certainly people who can relate to what you are going through. It seems that moodiness is a common side effect of ADEM and I'm sorry that it's causing a strain on your relationships. Let us know how we can help you in your recovery. Ken
Hi, dont loose hopes, you will be fine again. I cant understand how despaired you must be from all that suffering but I can have an idea. My daugher suffered from Adem, she remembers those burning pains. But now three years later she is just fine. She might have recovered faster as she was a small child. But dont give up. You will be fine too. I am sure your family will understand, you are in constant pain and that is hard on you.
Hang in there. I had similar symptoms but not quite as severe; I used a walker for about 3 months post attack but I can now walk pretty well -- my gait and balance very gradually improved, as have my other primary symptoms: numbness on my entire right side; fatigue; headache; some nerve pain. I also had double vision for a while, but that cleared up pretty quickly. I use over the counter pain meds to relieve some of the symptoms.
I'm now about 12 months out. Based on my experience, I can't stress enough that recovery is gradual and lengthy, but real. Be optimistic. Basically, the body is healing itself -- repairing the myelin damage -- and nerve tissue, I think, heals particularly slowly. Others have posted that it took them 18 to 24 months before they really felt they had turned a corner. I'm 66, by the way.