Recovery from ADEM

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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Recovery from ADEM

Postby Ian » Sat Oct 18, 2003 4:08 am

I was diagnosed with ADEM in June this year. My symptoms were complete loss of vision, mild paralysis of my legs and being unable to use my bladder. The illness was trigerred from a bout of tonsilitis immediately before the symptoms began

After around 6 weeks my bladder was back to normal and I was walking with little problem. My eyesight is up to around 60-65% but I still have dark areas in my vision and it is overall much darker (like having sunglasses on). Can anyone advise me about what I am likely to experience in the coming months as far as recovery in concerned? :arrow:

Thanks for any advice. Ian

Postby Guest » Sun Oct 26, 2003 9:44 pm

Hi Ian,

I was diagnosed with ADEM two months ago. I am a little better but not much. I too ,am wondering when things are really going to turn around. I am not getting too many answers from my neurologists. I was initially told one to three months. Do your symptoms come and go throughout the day or are they steady? Best to you, Karen

Postby Ian » Tue Oct 28, 2003 1:09 pm

Hi Karen,

As my sight has improved I am noticing that my sight is worse in the evening, particularly under artificial light where I get a lot of glare. The best time seems to be the morning in natural light.

It is now 4 months since diagnosis and I can estimate that I have around 60-70% sight and it seems no one can offer any definite advice on how much more sight I will get and how long it will take.

Good luck for your recovery, Ian

Postby kar33m » Sat Nov 01, 2003 9:36 am

i was diagnosed with adem in may, 9 days after my 17th b-day. The first hospital said i sufferred multiple strokes, i was then tranfered to Rush in chicago. my complete rightside incuding my face got paralyzed, i'm able to walk now but i have no feeling. My right arm is starting tobecome more useful to me. My right eye vision was affected, i also see darker images and theres a section where i canot see.
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Postby Guest » Thu Dec 11, 2003 9:17 pm

I cant really tell you what to expect as far as your eyesight is concerned, but i was diagnosed about 3 years ago with adem, and after undergoing total paralysis, as well as complete bladder loss, i can tell you that it will little by little get better. Its taken a while for my bladder to come back, but it almost back to normal, and my paralysis is about 98% recovered so.. My eyesight never was effected though so, this is all that i can tell you.

Postby Jan » Fri Dec 26, 2003 4:52 pm

If anyone here has acute demented encephalomyelitis (adem) would you please post here about it. how long you have had it, are you better, what is the outlook on it.

I am worried about my son. thank you.
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Reply to Dec. 12 posting

Postby Guest » Tue Dec 30, 2003 4:12 pm

To the person who posted on Dec. 12 and was diagnosed three years ago with ADEM. Can you tell me what is realistic to expect as far as recovery? My husband was just recently diagnosed with ADEM after an initial diagnosis of Transverse Myelitis 2 weeks prior. His symptoms included complete paralysis of the lower half of the body as well as the loss of bladder function. The second attack affected sensations in the hands but not loss of functionality. He is making good progress and is starting to walk unassisted, albeit unsteady. Can you provide any details on your experiences and what we can expect?

Postby Guest » Wed Jan 28, 2004 2:03 pm

I was diagnosed with ADEm Sept 24 2002. it started with slurred speach and eventualy i was totally parallysed. It is now a year and a half later and I still have therepy two to three times a week. I can now walk with the aid of forarm cruthches or a walker. I know I have come a long way but i still want to get to the point that I can walk unassisted. I am just wondering if anyone can tell me a little about there therepy and how long it took to get back to normal?

thank you



Postby Melissa » Fri Feb 20, 2004 5:50 am

I was diagnosed with ADEM in 1997. I was 26 at the time. I had brain surgery because the initially though it was cancer and they wanted to biopsy the tissue. I had almost complete paralysis on my right side. I lost two thirds of my vision in my right eye and a bit in my left. I still do not have any peripheril vision in my right eye and have a small dark spot on my left eye. My fine motor skills on my right side are stil not completely back to normal. and my sensitivity on my right side is still not quite the same. I don't expect any more improvement. You tend to improve quickly and then plateau.

Reply to Jan

Postby Margie » Fri Feb 20, 2004 8:23 am

Jan, my son has/had ADEM. What are you concerns?

My 3 year old son was diagnosed with ADEM in October. He was treated with steroids and got "better," released from the hospital. He did have seizures about 10 days later and is now on antiseizure meds. Although his physical skills are getting much better, he is having behavioral difficulties -- inability to sleep, short attention span, moodiness. Can anyone offer suggestions?

How long for recovery?

Postby GailVS » Fri Feb 20, 2004 12:03 pm

I was DXed ADEM in 1994. I would image it would depend what part of your brain was effected and to what extent. I had lesions my brain stem. I have had quite a bit of recovery but continue with, memory loss, speech problems. balance, right sided weakness,and swallow problems. But I have come a long way. neuro is surpised I am doing well as I am. I was in hospital ,including rehab for 3 months. There is always room for hope
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Postby ShirleyG » Wed Feb 25, 2004 2:17 am

Hello all,

My intial diagnosis was Acute De=myelinating encephlomyelitis, which I mistakenly thought was Guillian Barre Syndrome Since doing my own research on the Internet I realized it was TM rather than GBS. It has been 6mths since I was in hospital, treated with 1000mgs of methyl-pred daily for 5days and sent home on the 8th day on 40mgs for a month and reducing down to nothing over the next 4weeks. I have another appointment with my Neuro next month, another MRI will be done at the end of this year. My eyesight is not as good, and have had to have stronger reading glasses, and my bladder is still irritable. I still do not feel 'bladder fulness'. That, to me, is the 'pits'

ADEM on 01/06/03

Postby Steve Schoner » Sat Feb 28, 2004 12:41 pm

Hello, all

I acquired ADEM in Jan. of 2003. It came on very quickly after an insect bite to my head./ I was in a coma for 7 days, had a brain biopsy and have been recovering ever since. For the most part I think I am normal, but there are certain things that drive home the fact that I am not as I was previous to this event.

Vision in my right eye changes daily.

Left hand is at times slow to respond, that is it seems to be slower in finger tapping than the left.

Bladder control is a problem as even shortly after a drink, I have to relieve myself, with very little coming out. It was not like this before.

Then there are the memory problems, as well as the fact that I cannot read as I once did. In otherwords, I cannot retain what I read and after 10 pages I forget the first one and its content. And just keeping my eyes on the lines is tough. It is so bad that I must be mindful of where I put things as now I am very apt to completely forget where I placed them. Things like coffee cups with coffee on shelves and set in odd places, other than the table. And then there are numbers, I often cannot look at a phone number from a phone book and hold it in my memory enough to dial it. What is really odd about this is that my long term memory is very good, but my short term is much too short.

Also, my right hand and leg are at times signficantly colder than my left, and it seems to me that these extrmeties have less ability to control temperatrue than the left side.

My brain was affected primarly on the left side, and also the brainstem.

I am now wondering what my progress will be and whether I must worry about the postiblility of having MS after this. I have been told that when ADEM affects the brainstem that MS often results afterwards. I was told that the type of ADEM that I had could result in MS. I have had since being released from my one month stay in the hospital some strange episodes of muscle stiffness and some numbness in my fingers.

So, one year later I am still in recover from this terrible disease.

Here is a link to my site that deals with my brian biopsy slides. And there is also an extensive list of references at the end dealing with demyelanation diseases.

Steve Schoner
Steve Schoner

Re: Reply to Jan

Postby Stephanie » Sat Apr 03, 2004 10:05 pm

[quote="Margie"]Jan, my son has/had ADEM. What are you concerns?


My daughter was diagnosed with ADEM and suffered ataxia, unable to walk, loss of sight and I was informed after the steroids she would be back to her normal self. She has been off of the steroids since December and now I notice hyper activity, short term memory, and she has gone backwards educationally by a full year. I do notice we have good and bad days but it seems that some things are coming back. I was told it was a slow process but I am nervous of what may come later.


Postby Shara » Mon Apr 05, 2004 4:38 pm

I am wondering if anyone out there had the meth-pred. treatments for five days and got better gradually and then got bad again. Two weeks after my treatments I was feeling perfect for a week and then I went numb again. two weeks of being numb and the dr gave me oral doses of meth-pred. for six days and after feeling better now Im numb again. its a little milder each time so it must be getting better right? i did have another MRI before he gave me the oral meds and he said that it is heal so thats good news. I just want to know if Im the only one. By the way Im praying for all of you who have suffered this as well.


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