What went wrong?

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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What went wrong?

Postby cripgirl » Mon May 25, 2009 2:27 am

Hi guys,
I just found this site through searching the net frantically to find more info on ADEM.
Reading all the posts here I really do wonder what went wrong with my treatment. :-\
Most of you diagnosed with ADEM had it very bad initially, but you regained most of your sensation and can walk.
I was paralysed from the neck down when I woke up from the coma, but it went down to T4/5 level ie the waist and I am now in a wheelchair.
I think the doctors didn't know initially what I had and I was pumped with antibiotics.
First they said it was TM and then they said it is ADEM.
I'm just wondering whether there is anyone out there with ADEM with a similar outcome to mine, or is anybody else walking again?

Thanks for reading this and maybe even replying ;)
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Re: What went wrong?

Postby marieke » Mon May 25, 2009 10:08 am

Many people with ADEM are left with deficits such as yours, you are not alone. I hope that more people respond to your post. Please keep checking in.
Marieke RN (TM at T1 March 18, 2004 @ age 28 )
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Re: What went wrong?

Postby edward » Mon May 25, 2009 10:53 am

I too was in a coma, almost 10 days. When I was in a coma they pumped full of everything including tuberculosus meds. I was paralyzed from the waist down when I came to. They did not figure out what I had till about 14 days in the hospital. Its been 14 months post and today I can walk and run and do everything I did before my visit in hell. I still deal with some nerve pain in the legs and some minor spasms. My face is still partially numb but I can handle that , at least thats not pain. Its been a long hard road back but I got my life back. I was working out 3x's per day six days per week rehabing my body among other things. Feel free to email at ed@townesquaremi.com. Keep fighting.:)
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Re: What went wrong?

Postby LoraB » Sat Jun 20, 2009 7:41 am

My husband had a very severe case of ADEM 3 years ago, and he still has many disabilities. However, he has also come a very long way. He pretty much has had to relearn how to do everything all over again including holding his head up, sitting up, talking, walking, thinking, etc. It has been a long, crazy recovery. I do think some people recover fully and quickly, and others don't. I think it depends on how severe your case is too. My husband, Grant, is lucky he is walking, talking, etc, or even alive. He had so much brain damage that he wasn't going to live, and if he did live he probably would never function again (that is what the docs would tell us during his 5 months stay in the hospital). He has come a very long way, but unfortunately will probably always have some disabilities. He can walk, but with a pretty bad limp. His balance has improved but still not very good. (He was paralyzed in both legs for a period of time). He probably will never run again, but you never know -- we just keep doing therapy to try to improve his quality of life. He also is still paralyzed in his left arm and hand. We have tried soooo hard to get some function in his hand, but so far we haven't had much success -- but we are still going to keep trying. He is also deaf in his left ear, has a blind spot in his right eye, and still has some cognitive issues. He still has not gone back to work, but we are hoping that will occur by the end of this year. However, he is soooo much better than he was. Hope this gives you some insight or is helpful information to you.
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Re: What went wrong?

Postby cripgirl » Sat Jun 20, 2009 7:48 am

Hi LoraB,
thank you so much for your reply. It's so good to know that there are other people out there who went through the same s*** as me. The docs here are not very knowledgeable about ADEM and I have to beg for some info. It's good to hear that your husband made such great recovery, and I wish you and him all the best. I hope he can go back to work as planned, because I went back this February, and although part time it is great to be part of the 'real world' again.
Thank you very much again,

All the best,

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