involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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Postby bally » Fri Jun 05, 2009 3:10 pm

I am 20 years old and never had anything seriously wrong with me until recently when i was diagnosed with ADEM. I dont remember even being admitted into hospital. Apparantly i was taken in with a headache at the back of my neck and a stiff neck.

Mom told me they gave me a CT scan which showed nothing and also did a lumber puncture. They had to sedate me as i was pulling out all the tubes, When they sedated me i stopped breathing altogether. I was then put straight onto life support. I was on that for 3 1/2 weeks.

They did an mri scan as i was on life support and firstly thought it was meningitis. Then the meningitis drugs werent working and thought it was MS. MRI results then sent to another hospital who told them it was ADEM.

Once i came off life support doctors were shocked i still had my memory remembering things just 2 days after coming off life support. They thought i would have alot of brain damage. Was told i would need about 4 months rehab but didnt even need that.

Its been 4 months since coming out of hospital and it doesnt really affect me much. It only really affects my mind.

Im just glad i came around from life support.

I never knew anything or even heard about ADEM. Now i can see it affects quite alot of people.

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Joined: Fri Jun 05, 2009 2:59 pm

Re: Recovery

Postby tatepate » Tue Jun 09, 2009 5:47 pm

I have just been diagnosed with ADEM. It started with me coming down with the flu in Dec. i kept going back to my primary doctor bc after the first week of the flu I started feeling worse. My head constantly hurt, I was having sharp pains down my arms and legs and I had started to vomit. He kept telling me that it was just the flu and it had to run it's course. This went on for 3 weeks. 2 days after Christmas I got up and couldn't urinate. I thought maybe I was dehydrated from being so sick, so I just started pushing the fluids and hoped that I would be able to go. This went on for 2 more days. I finally decided that I was going to skip going back to my reg. doctor and go straight to the emergency room. They cathed me there and admitted me and I was there for 4 days with no answers on why my bladder wasn't working. Then on the 4th day I woke up and tried to get up to go get cleaned in the bathroom and I couldn't move my legs. They ended up transferring me to a better hospital with more experienced doctors and I was diagnosed with TM. I had a diffusely enlarged spinal cord and brain swelling. They told me bc of how bad my swelling was that I would never walk again. I was started on IVSM that day and stayed on if for the next 5. By the 5th day I was walking with a walker. I was discharged on my 12th day in that hospital and sent home to a physical therapist who came to my home 3 days a week for 3 weeks and then i was transferred to a physical therapy outpatient program. I stayed in that for 12 weeks and I am now currently able to walk and even jog on my own. I went for a follow up with my neuro from the hospital and she wanted me to see an MS specialist. I went to him last week and he said that I don't have TM, that I have ADEM, which makes sense. I know that I dont remember alot of stuff from when i was sick, like my kids on christmas morning or visiting relatives on christmas day. But I have pictures and I apparently participated in all of it! lol. Sorry that this is so long! just wanted to let you know that I have pretty much fully recovered. I still have times where I have to cath but that is basically the worst of it and I am hoping in time that I will be able to do away with that too.
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Joined: Fri Feb 06, 2009 6:37 am

Re: Recovery

Postby gg101 » Wed Jul 29, 2009 4:57 pm

Hello, My father-in-law was diagnosed about two weekes ago with ADEM. Three weeks prior to that he was misdiagnosed with MS at a different hospital. He is on steroids and he did have the plasma exchange treatment. He is 50 years old. After the treatment he regained strength but he is still not able to see well. Thats how it started, he lost his eye sight and then he couldnt walk and he would bable things. He can hold a conversation now but it is not pleasant. He is undergoing physical therapy but is not cooperating, he has become very angry and mean, he is forever cursing the world and everyone in it. We tell him he needs to cooperate with the nurses and doctors but he just doesnt want to. He is kind of acting like a mad man. It just happens from one minute to another and today he became slightly violent. Has that happened with either of you? We dont know what to do with him, the nurses dont even want to deal with him in the hospital and we think they are going to try and put him in a psych ward? Any information will help.
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Joined: Wed Jul 29, 2009 4:19 pm

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