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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Re: Recovery from ADEM

Postby Shirley » Wed Apr 01, 2009 8:08 pm

Hello Lauren,
Thank you for sharing your daughter's fight with ADEM. It is not easy to put all your thoughts on paper as you have done, so concisely. Everybody recovers to a degree and every individual is different in the time span of recovery. There are loads of posts on the forum on ADEM which I'm sure you've read and consequently educating those you come into contact with. Any neurological illness is hard to dx unless, like your son, there is physical signs, ie haemorage. There is such 'grey' areas in TM, ADEM and MS, that frankly,if the Neuro's don't know how are we to know. Thinking of you and your family in your struggle.

Cheers

:ymhug: :ymhug: :ymhug:
Keep well



Shirley

TM since 2003 - 90% recovered
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Re: Recovery from ADEM

Postby Jenny Hill » Fri May 22, 2009 12:51 pm

Hi,
I was diagnosed with ADEM in Jan 2004. I had been suffering with a really bad cold for a couple of months. My legs got weak and I kept falling down. My parents took me to the hospital because I couldn't wee for hours and my bladder was like a rock. 3 hours later I was paralysed from the waist down. The doctors were unsure of what it was, they thought it might be Meningitis and so performed a lumbre puncture. A few days later they told me it was ADEM. I was paralysed for just over a week and then slowly the feeling returned to my toes and feet, gradually working it's way up my body.
It has been just over 5 years now and I have recovered as far as I am going to. I can walk again but the full feeling hasn't returned to my lower half. I suffer from extreme fatigue and unfortunately can no longer live the active life I used to. I struggle to concentrate and take on board information. I still have problems when it comes to going to the toilet and have suffered many an embarrassing situation. I have reasonably regular muscular spasms, sometimes it's just my legs, other times I can't physically move. I find it usually depends on how tired I get and what the weather is like. I am still learning about what I can and can't do, but people around don't realise just how difficult things are and how much effort everything takes.

Has anyone experienced similar?
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Re: Recovery from ADEM

Postby wajabi38 » Thu Jul 30, 2009 3:59 am

Hi, i was recently diagnosed with ADEM, after a long and painful recovery from a very bad episode of west nile virus infection while deployed in the military, at first they thougt it was MS, but after 4 lumbar punctures they deytermined it was ADEM, 4 brain lessions also contributed to the suspicion of MS, I could not walk, eat or even shave my self,i still have bladder issues like starting to urinate and the stream is very weak, not to mention weakness and tingling in my legs and tip of the toes and fingers, I also developed dry eye syndrome and although I can run sometimes it takes me a while to get the speed I use to have, for me it has been very confusing and challenging, I had to wait almost a year to get back to work, this started last August 2008, and it was not until last April, that I was finally ruled out of MS and diagnosed with ADEM, but i have never received any treatmemnt, is there any treatment for this condition? please let me know, because here in Veterans Affairs appointments can be very slow, and far in between, plaese share your information and thank oyu all! :p
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Re: Recovery from ADEM

Postby wajabi38 » Sat Aug 01, 2009 3:08 am

Well same here brother with the excemption of the sudden episodes of leaks or "embarrasing" moments,less than normal feeling inmy legs,and dry eye syndrome,all thanks to an infection with west nile virus that was complicated with asceptic meningitis, then after a long struggle,htey ruledout MS, and I was diagnosed with ADEM, but I ask you are you under any treatment,because I have not been given anything for this please share!
Jenny Hill wrote:Hi,
I was diagnosed with ADEM in Jan 2004. I had been suffering with a really bad cold for a couple of months. My legs got weak and I kept falling down. My parents took me to the hospital because I couldn't wee for hours and my bladder was like a rock. 3 hours later I was paralysed from the waist down. The doctors were unsure of what it was, they thought it might be Meningitis and so performed a lumbre puncture. A few days later they told me it was ADEM. I was paralysed for just over a week and then slowly the feeling returned to my toes and feet, gradually working it's way up my body.
It has been just over 5 years now and I have recovered as far as I am going to. I can walk again but the full feeling hasn't returned to my lower half. I suffer from extreme fatigue and unfortunately can no longer live the active life I used to. I struggle to concentrate and take on board information. I still have problems when it comes to going to the toilet and have suffered many an embarrassing situation. I have reasonably regular muscular spasms, sometimes it's just my legs, other times I can't physically move. I find it usually depends on how tired I get and what the weather is like. I am still learning about what I can and can't do, but people around don't realise just how difficult things are and how much effort everything takes.

Has anyone experienced similar?
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Re: Recovery from ADEM

Postby kmsinlex » Fri Aug 21, 2009 7:11 am

I want to thank the previous posters who have generously shared their stories, because I have learned far more from this forum about ADEM than from my Drs or any other source. In early May of this year, after a minor cold, I developed numbness and tingling in my arm which eventually spread to my entire left side from head to toe. An MRI showed brain and spinal cord abnormalities and lots of testing began. At the end of June I was hospitalized with left side pain & numbness, fatigue, weakness, nausea, vomiting, loss of appetite, and weight loss. I was very lucky as I only had paralysis below my left knee for two days. Was given IV antiviral and large doses of predisone.
I've been home for 7 weeks and am now off the antiviral and on a tapering down dosage of prednisone. My expectation was that the symptoms of numbness and pain would gradually improve, but this hasn't happened. Some days are better, but some days are worse and the symptoms seem to have changed somewhat. I still have the numbness, but have burning and recurring shooting pains in my left arm. My left mid section, front and back, are numb and burning and I feel like my insides are stuffed with blocks of wood. My left leg and arm are wooden and movements are jerky. My left toes feel like they are bound with tape. My neuros have been of no help and I won't get to see them until next week. From everyone's stories, it sounds like recovery takes a long, long time and that progress is very up and down. This gives me hope that I have to be patient and wait for improvement. I don't know how much of the nerve damage will heal, but hope that I can get beyond the constant pain or at least find a level that I can live with. Your stories have given me hope.
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Re: Recovery from ADEM

Postby Jenny Hill » Fri Aug 21, 2009 8:09 am

Hi,
I have found that the doctors don't know much about ADEM and my Neurologist was very quick to discharge me without any medication or advise for recovery. I have been pushing with my GP and I have been referred to another Neuro at the City Hospital in Derby next month. I doubt he will be able to help me but, I am gonna go with plenty of questions and have a bit more information thanks to all the comments on this website.
I have only been on Amantadine for my fatigue and Oxybutynin for bladder control during the night. My fatigue is still extremely poor though and I am still having to get up plenty of times in the night so what they are doing I'm not exactly sure. It have been on my meds for a couple of years and it has been over 5 years though since my diagnosis so maybe I should have been on something earlier.
I find that having this does get me down a lot and I find it hard to discuss with people close to me as they cannot understand just what it is like. How do you explain your extreme fatigue to them?

All the best.

Jenny
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Re: Recovery from ADEM

Postby marieke » Sat Aug 22, 2009 7:26 am

I suggest you print out The Spoon Theory and then they might start to understand the fatigue...

viewforum.php?f=109

I have it (the link) posted here.
Marieke RN (TM at T1 March 18, 2004 @ age 28 )
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Re: Recovery from ADEM

Postby Jenny Hill » Mon Aug 24, 2009 12:57 am

Thank you very much for suggesting The Spoon Theory to me. It is brilliant. I have sent it to some of my family and I hope that this will help them to understand better.

Thank you. :)
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Re: Recovery from ADEM

Postby aya » Wed Oct 28, 2009 6:30 am

my daughter was diagnosed with adem 2 weeks ago she is in steroid by mouth now since we got out from er we didnnt see any improv yet could anyone tell us how long it will take to see just som improvment , thank you, she is 17 months, she cant walk anymore she move barley her left hand and left leg , any information would help thank you so muchaya

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Thanks for any advice. Ian[/quote]
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Re: Recovery from ADEM

Postby MATHEWMATHEW » Fri Oct 30, 2009 12:09 pm

HELLO AYA
MY NAME IS SCOTT I HAVE A 28MO OLD SON WHO GOT ADEM AT 13MO "FROM MMR SHOT" HE WAS UNABLE TO MOVE ANYTHING HEAD ARMS LEGS HANDS FINGERS MOUTH UNTILL IVIG TREATMENT THEN MOVED 1 HAND A LITTLE WE STAYED IN HOSP FOR 3 WEEKS STILL NOT MOVING ANYTHING SPENT 3 MO IN REHAB SLOWLY MAKEING GAINS IT WAS 6 MO BEFORE WE CRAWLED AGAIN IT HAS BEEN 15 MO POST AND WE STILL DO NOT STAND OR WALK BUT WE STILL IMPROVE SLOWLY IF YOU HAVE ANY QUESTIONS PLEASE CALL 580 399 4570.
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Re: Recovery from ADEM

Postby yadman » Sat Oct 31, 2009 3:05 pm

I was first hit with ADEM in the beginning of january. I too was given steroids to treat. For the first 3-4 weeks there was barely a whimper of improvement. Up to around 8 weeks there was some degree of improvement. I had movement but no strength. Still couldn't bear weight on my legs.

I then had a burst of improvement over a 3-4 week period where I learned to walk again. Now several months on, I still have some problems but nowhere near what the specialists had said. It was suggested that I would need a walking aid to get around if I did actually manage to walk again. From what I've gathered a lot of the recovery seems to come down to how fit you are/were before ADEM comes on so at such a young age I'd reckon the prognosis would be good.

You can only really hope.
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Re: Recovery from ADEM

Postby aya » Tue Nov 03, 2009 5:07 am

yeah my daughter she just finisht her traitment a week now ,she seems tired still .what we see is that some days she wants to play ,some just laying down i don't know if this part of recovry or something else ,we can't tell whats she feels beacuse she is 17 months old and not talking yet,sometimes she laugh at everything ,just laughing,she stand up sometimes and doing some steps but hoding the coach she can't walk by herself yet (she use to before she get sick)can someone tell me how ur feelings after finishing ur traitment ? thank you
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Re: Recovery from ADEM

Postby lisaohara » Mon Nov 09, 2009 4:34 pm

Hello,
My name is Lisa and my beautiful daughter Carleigh is 18 mos old. I woke up on Sept 8th to her having a seizure. She was perfectly healthy and had a viral infection the previous week. She spent a week in the ICU at Children's Hospital in Vancouver, Canada on a respirator. She has now been in rehab for 8 weeks. She is still using a feeding tube and can roll over and starting to sit on her own but cannot crawl or walk like before. I don't know how she still has a smile on her face. The docs said she is not progressing a quickly as hoped and said she'd be out of the hospital now but isn't. I heard the younger you are when ADEM hits the more resilient. Any other parents out there. It is so hard when they can't describe to you what is going on or how they are feeling. I've been very traumatized by this whole event and would like to connect with someone in a simialr situation. I heard it is 8 in a million chancess to get it...average age 5-7 years old. Any info would be helpful. Since neuros don't like to commit in telling you any prognosis!!!
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Re: Recovery from ADEM

Postby zell » Tue Nov 17, 2009 12:27 am

I was honestly expecting to see more cases like mine with people that were diagnosed with ADEM, fought with it for an extended period of time, then had it recede for a period of time, only to have it come back and be diagnosed as MS instead.

Was 17 in HS, kept throwing up and feeling dizzy like I had the flu, but it lasted for a month with my physician having no idea what was wrong. Had a checkup with my optometrist and he got angry at me asking if I was drunk because my eyes where shaking. Since I hadn't been drinking he scheduled an appointment with the neurologist the next day and she diagnosed it as ADEM.

7months of hell and tons of anabolic steroids it receded. She told me that if it ever came back it was probably MS. 6 months later my left eye did the lazy eye thing and i lost my balance again, a bunch of MRI's and spinal taps later it was MS.

Guess with the "If it comes back it's most likely MS" comment I expected it to happen more often. To be honest all physicians seem to have 0 idea what ADEM is, along with a couple of the many neurologists I've seen (3 moved away) though.
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Re: Recovery from ADEM

Postby marieblond » Tue Nov 17, 2009 2:01 am

lisaohara wrote:Hello,
My name is Lisa and my beautiful daughter Carleigh is 18 mos old. I woke up on Sept 8th to her having a seizure. She was perfectly healthy and had a viral infection the previous week. She spent a week in the ICU at Children's Hospital in Vancouver, Canada on a respirator. She has now been in rehab for 8 weeks. She is still using a feeding tube and can roll over and starting to sit on her own but cannot crawl or walk like before. I don't know how she still has a smile on her face. The docs said she is not progressing a quickly as hoped and said she'd be out of the hospital now but isn't. I heard the younger you are when ADEM hits the more resilient. Any other parents out there. It is so hard when they can't describe to you what is going on or how they are feeling. I've been very traumatized by this whole event and would like to connect with someone in a simialr situation. I heard it is 8 in a million chancess to get it...average age 5-7 years old. Any info would be helpful. Since neuros don't like to commit in telling you any prognosis!!!



my daughters name is lisa as well. hello lisa in vancouver?? to vancouver she was a year ago, and she is 28.

do not overestimate the neurologists. they are not god. TM is in my eyes a collection term for a certain range of neurological disturbances. and as in the field of cancer, they are standing at the beginning of newer ways for helping us. I will get in contact with a center of stemcell research for checking the chance to improve my status. Perhaps in few yrs it will be a way. nowadays they make tests with stem cell transplantation or injection with ALS and parkinson.

hold on with your baby. my lisa had a heavy fever cramp with 3 and had to take antiepileptica for few years. She had this epstein-barr-virus-infection with 4 and lost a third of weight... and further bad things. but now she is adult, a little bit heavy ;;) and rather healthy. she is married now and has a good job as dvd-designer.

our children have the great present of our love.....
That which does not kill us makes us stronger.
Friedrich Nietzsche
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