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: Reply to Jan

Postby Joanne » Sat Apr 24, 2004 7:38 am

Margie wrote: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?

My 4 year old neice was just diagnosed with ADEM, she is on steroids and is making slow progress. How is your son doing? Do you know if the seizures is a common effect with children diagnosed with ADEM?


Postby ath221 » Fri Sep 10, 2004 6:38 am

I was diagnosed with ADEM in early July 2004. Iam ambulating on my own, but continue to experience decresed sensation and propreoception on my left side.. I am hopeful that iwill improve, In the last week, I have noticed increased sensation when I make a fist on my left side.I am currently tapering off of PrednisoneWas on 50mg QD now taking 10 mg QD.


Postby zorro » Tue Sep 14, 2004 6:28 am


What did they told you how long it would take before

you could expect any recovery?

And what was the time "if you are recoverd"?

They told me that i would get better every day but it

dusn't feel that way-up's and down''s-Is that normal?

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Joined: Sat Feb 14, 2004 5:44 am

Postby John » Thu Sep 16, 2004 6:51 am

I got it about 3 years ago. Didn't affect my vision but did my walk. The nuerologist wasn't too much help , just said this is what you got and this is what to expect. I am fine now except my (at times my unsteady walk - I can live with that and in the morning my hands are unsteady ) walk.Also it took awhile but now i have good blader control. The one thing that i took upon myself to do was to start working out with a trainer to try to regain my muscle weight. It has worked out great! My walk is steadier and I shake much less. I wasn't a big weight lifter but I wanted to regain some muscle weight. My trainer works with some cases similar to mine - ms, etc . Please ask your doctor first , but in my case it has GREATLY improved my life. Good luck and remeMber - 90% of it is attitude! It could had been much worse.


Postby zorro » Thu Sep 16, 2004 9:03 am


Maybe i belong to the "lucky" (like you) because it didn't

affect my:vision,bladder or walking.

I am doing better now but still have that pins and needle feeling

and muscle fasiculation from time to time. I do not have to work

with a weight lifter but maybe i have to work at my attitude!

( 90% is a lot but you are right)

Thanks and good luck.

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Joined: Sat Feb 14, 2004 5:44 am


Postby Brian » Tue Feb 22, 2005 8:17 pm

My Son Has ADEM As Of April 19 2004 And It Has Been a Real Rough Road So Far,He Is Bedfast For Now Has Feelings In His Upper Body But Not In His Lower Body ,Can Move Hands Arm Upper Body Pretty Good,But Has No Balance To Set Up Or Even Think Of Walking Yet.

Will He Get Any Better :(
My Son Brian On April 10 2004 Was Taken To The Hospital For Tingling In His Hands And Feet ,So They Did A MRI And Said He Had Multiple Scerosis,Tow Weeks Later he Started Have Breathing Problem So He Was Put On A Ventilator
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Location: Hagerstown, Maryland

Re: Recovery from ADEM

Postby umassjem » Tue Nov 04, 2008 2:17 pm

I was diagnosed with ADEM in 1994. I was almost 19 and a freshman in college. I lost my speech and mobility. My memory and cognition has not appeared to have been affected. With continuous therapy, I have made slow small improvements. I still rely on a wheelchair, but I am now able to ambulate a little. My speech has improved, but I am still breathy and difficult to understand at times. I have a right sided hemi-paresis (similar to a stroke victim). I went back to college; I am living on my own and drive again.

I have never met anyone with ADEM. I would love to hear from anyone who wants to talk.

Take care,
Jennifer in Massachusetts
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Joined: Tue Nov 04, 2008 2:09 pm

Re: Recovery from ADEM

Postby nmowbray » Wed Nov 19, 2008 2:40 pm


My partner and father of my baby girl ws diagnosed with ADEM in March 08 after a holiday to spain. A couple of days into the break Stuart said he didn’t feel ‘quite right’. He felt dizzy, he complained, with a funny feeling behind his eyes. The symptoms continued for the rest of the holiday and he was really tired – sleeping more than 12 hours a day and still being incredibly tired when he woke up. He started to forget things and to cut a very long story short was admitted to hospital a week later. They found inflammation on an MRI scan and after a few weeks diagnosed ADEM. He got progressively worse, aminly memory affected at this stage but also bladder control, difficulty swallowing, abnormal eye movements, poor sight, unsteadiness, and the mscles in his face weakened so much he had to hold his eyelids open with his fingers. After 2 months in a Neuro Unit he was sedated so much for his aggression he slept virtually the whole time for a week. When he woke up he didn't know who any of us were, including his parents and sister.

He is now in a rehab unit and has been for 6 months, he has lost much of his long term memory and short term seems to be about a minute. he repeats the same questions over and over as he can't remember the answers. He doesn't know he has a daughter (she was 6 months old when he got ill and the apple of his eye, she is now 14 months old) but does sometimes know who I am. he has had another scan but the Neuro tells me this won't show any improvements as this can't be measured??? Is this true?

He doesn't put down any new learning apparently, memory and behavioural difficlties definatley the worst part.

Can anyone help with guidelines for recovery. Some people seem o think it just takes a really long time and he will get ther, others say it is very unlikely he will recover as he has not made massive improvements over the last 6 months. Physically he is mch better now, not using a wheelchair now although still unsteady but his sight is awful, he is constantly dizzy and has virtually no memory.

I am so worried, Stu is 31, i thought we had a whole future together! (sorry this is so long!)

Love Nat :(
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Re: Recovery from ADEM

Postby fnrbeaupre » Thu Nov 20, 2008 6:35 am

My husband was diagnosed with ADEM in Dec 2006. At his worst, he was paralyzed on his left side, could not talk, or breath on his own. At one point, the doctors told me he only had days to live. It took several months of acute rehab for him to walk and talk again. He had to learn how to feed and dress himself and do all the things that usually come naturally. So prepare yourself for a long recovery…one doctor told me in the beginning that recovery from ADEM is a marathon, not a sprint…two years later, I know what he was talking about. So while my husband still has, and probably always will, physical (left-side weakness and balance problems) and cognitive (poor short-term memory and problem solving skills) deficits, I feel blessed by the recovery that he has made. My advice is to find a good doctor…ADEM specialists are hard to find, but they are out there…at the Mayo Clinic, Johns Hopkins, and the Cleveland Clinic.

So don’t give up hope…it will get better! If you want to talk more, feel free to e-mail me.
I’ll keep you in my prayers.
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Re: Recovery from ADEM

Postby deonv » Mon Jan 19, 2009 3:55 am

Hello all
I was diagnosed with ADEM 2 days after a neck operation in Sept 2008.
MRI showed severe inflamation in my brain stem and I was paralysed from chest down for almost 1 month. I was in hospital for 3 weeks on high doses of steroids and had fever and vision loss as well. I battled to breath and swollow and my lungs were full of phlem. i had continuous physio during my stay in hospital which helped very much. I had never heard of ADEM before and was very stressed with the loss of my limbs. My doctor even suggested my brother fly out from London as I was seriously ill. I went from hospital to a rehab facility for a week and started exercising. I learnt how to walk in that week and left on my own 2 feet miraculously. i have bladder problems but every day my prognosis gets better and better. I still have pins and needles in my feet and hand and my muscle strength is definately not what it was before.
I have alot of faith that I will recover and that patience plays a big part. My neuro says give it 2 years to recover the most your body will allow, so thats the plan and goal.
I am back at work and basically feel 80 % recovered, my main problem been an overactive bladder. i catherize twice a day and the urologist says give it 6 months to come right. I feel it will be longer but that is fine. This disease gives you attitude and it has to be positive and you must be motivated to get better. You will recover alot more that you might think so be positive and have stax of patience.. God bless you all and heal you to full recovery.
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Re: Recovery from ADEM

Postby mitch2007 » Fri Jan 23, 2009 10:46 am

hi, i am currently in a band and our drummer was diagnosed with ADEM (that's the doctor's best guess we still dont know what the real cause is)... i was just wondering if he'll ever be able to play drums again... we dont want to replace him and we're willing to work with him for however long it takes... i just want to know if he'll even be the same person... i've read that there are personality changes and escalated aggression... please reply
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Re: Recovery from ADEM

Postby xemlew » Sat Jan 24, 2009 11:12 am

Hello, I'm Emily + I'm 14 years of age.
I was diagnosed with ADEM + Optical Neuritis 2 months ago.

Early weeks of October'08, I was suffering with severe headaches, however thought nothing of it as prior to this i had quite a nasty bump to the head playing rugby. Eventually, the headaches got so bad i found it very difficult to get up in the mornings for school, and even to move around. My dad took me down to Port Talbot Hospital where i was briefly examined but sent away with apparently "too strong a course of Co-Codamol." I was kept off school because after taking 1 or 2 tablets, i started vomiting and could not keep food or drink down.

On the 16th October'08 i woke with blurriness in my left eye, which also affected my balance, so i was taken down to Cwmafan Health Centre, where my doctor arranged an appointment with the Eye Specialist in Singleton Hospital.

On the 17th October'08 i went to Singleton Hospital where i was examined by the Eye Specialist who said he saw that i had Optical Nuritis. This is inflamation of the nerves at the back of the eye. I was admitted into the Childrens Ward in Singleton Hospital, where i stayed for Friday Night +Saturday Night and transferred on Sunday to Morriston Hospital.

When i arrived at Morrison Hospital i had a line inserted into my hand because i could not keep anything down, so the anit-biotics had to be inserted intravenously. After the first couple of days of being in Morriston, i had my first MRI Scan, luckily they found no Tumors or any obvious things. Then i had to have my first of 3 lumber punctures, these were extremely painful but showed the doctors what they needed to see. They found around 300 protein cells, which is way more that what a normal body should have so they knew there was something wrong.

After about a week or so, i had to go back to Singleton Hospital for another eye check up, photographs of my eye+ a field of view test. The results of my f.of.v test was that the peripheral vision in my left eye [which is where i had Optical Neuritis] was much weaker than my right, even though my vision had improved! When i went back to Morriston i had an eye to brain response test, where they stuck electrodes to the back of my head, this showed that the signals getting to my brain were slower than average!

After numerous blood tests, all other sorts of tests and scans of my chest... my consultant, Dr.Gareth Thomas came to the conclusion that i had ADEM. AcuteDisseminatedEnchefloMyelitis! Throughout my first stat in hospital, i had many problems with my bladder where i could not pass water, which was rather painful, but the anti-biotics definately helped, despite the pain of having lots of new lines!! The day before i was let out of Hospital, in the morning i was very, very hot and had a temperature. As i walked into the bathroom, the change of temperature made my head spin and unfortunately i collapsed! It was very scary but luckily i was put on Oxygen and got my head together :)

When i was finally allowed out of Hospital, i was very weak and had lost quite a bit of weight, but luckily i am usually quite a fit and sporty girl so it was mostly muscle i had lost, not fat! However, i had great difficulty walking, sleeping, eating, drinking +my balance was awful! I had to cling on to someone whenever i wanted to go somewhere because i was very unsteady on my feet. While being at home, my headaches +my vision started to clear and i was able to read books, watch tv +go on the computer. After a week or so, i started getting dizzy spells whenever i got up to start walking +i actually collapsed about 5 times before one morning i woke up with the most excruciating pain in my head where i was once again taken into Morriston Hospital.

In Hospital, i had great difficulty sleeping the one night that i was in, but i was given regular paracetamol + ibuprofen to relieve the pain. I then had to have different medication called Gabapentin to take away the itchy sensation i had in my body. This was a horrible feeling, because it was painful and annoying, but luckily the tablets have been tremendous!

I was then let out again, and i felt a great improvement in my recovery! However, a week before Christmas, my vision started to go blurry again, my speech was slurring +i couldnt walk properly, i was kind of walking with a limp. I was then re-admitted AGAIN into Morriston Hospital, where i was yet again taken for an MRI Scan. They did scans of my brain, spine +the rest of my body! The Scan unfortunately lasted for almost 2 hours, +i was also injected with ink, which kind of hurt; HA! To help speed up my recovery, Dr Gareth Thomas suggested a course of steroids- so i was hooked to an IV machine and injected with steroids on the "3rd, 24th + 25th Of December. Since those steroids ive felt the best ive ever felt over the last 4 months or so!
+Now i am continuing to get better, and should be back to sport in a month or two, thanks to Singleton+Morriston Hospital, Dr. Gareth Thomas + My Physio, Helena!
That is my story (:

---The Other day i was watching a film called 'The Invasion' Starring Daniel Craig + Nicole Kidman. It's about an Alien Virus that attacks the world, however, Nicole's son previously had ADEM when he was younger and had become immune to the virus!!
At Least if an Alien Virus did attack,We'd be safe B-)
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Re: Recovery from ADEM

Postby shmuella » Mon Feb 02, 2009 6:42 pm

I was diagnosed with ADEM in Oct 2008. I'm 39 years old. It started the day after I had my carpets cleaned. I used a green cleaner. I woke up the next morning with an insane headache. I couldn't see, couldn't think, couldn't move my head. I naturally thought it was due to the solution used in cleaning. THe headache subsided but I noticed that I was having numbness and tingling in my body, esp under my armpits (it felt like a sunburn), and muscle pain in my chest. A few days later, I felt the urge to pee but couldn't. This continued into the night and so the next morning I went to the gyn, thinking I must have a bladder infection. THe gyn had no idea what was going on but put an indwelling catheter in and sent me home. Within a day I was feverish, couldn't stand, couldn't write, and the headache and neck stiffness had returned in full force. I barely made it to the ER the next morning, where they admitted me. By that point, I'd gone numb from the chest down, and developed double vision (6th nerve palsy but no optic neuritis). I was on oxygen at night because my levels kept dropping. I responded really well to the steroid treatment and within a few days, was standing and walking with assistance. I was in the hospital for 9 days and rehab for 5. By the time I left the double vision had subsided.

Now, several months later, I am almost fully "recovered". MRIs showed no new lesions and resolution or partial resolution of the existing lesions (save the ones in the white matter). Despite this seemingly encouraging information, I continue to feel miserable. I have limited energy, and tire quickly from walking and activity. I have a 3 year old and can't pick him up and play with him. I still have numbness in my feet, can't regulate temperature in my legs and feet, and pins and needles when I stand. My bladder is still a mess-- need to self cath 90% of the time. Bowel is still not functioning either, even with MIralax.

The worst for me, however, is concentration and short term memory problems. I can't remember things or retain information. These symptoms seem to have come on about a month after I left the hospital. I am not the same person I once was and it's incredibly taxing to try to pull off what I used to do with little effort, especially in my work environment (I went back to work 20 hrs/week 2 weeks ago). The cognitive struggle is affecting my mood and I feel myself slipping into depression.
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Re: Recovery from ADEM

Postby akjosh » Tue Mar 17, 2009 8:45 pm

Diagnosed in Jan 09. About 5 weeks weeks earlier I had a bad viral infection that came on sudden, 2 days latter it was gone. I thought that was the end of it. New years party 09 I begin to feel strange with nausea I blew it off. The following saturday I had small headaches and the strange feeling returned. Which is odd I rarely get headaches. I went to work monday morning still feeling odd, I had my monday teleconference and I had a very hard time dialing in along with logging into my computer and navigating programs. I then started to lose my balance, like my balance would just shut of for a second or two. The vision in my rt eye was slowly going, which made me run into things. My manager quickly noticed and urged me to seek medical attention. My mom had to take over the paperwork at the docs when I couldnt fill in the fields correctly. The doc ordered a CT, which came back showing something because he immediately ordered an MRI. By this time my family with their medical expertise made an appointment with a neurologist. When the mri results came back the doc sat me down and told me I had a severe case of MS. By this time I was in a constant state of confusion but still walking and talking 3 days into it. My neuro appt the following monday. That weekend I completely lost my rt side. I remember it going sunday and I worked really hard to get it back that night, which I did recovery most movement and I seem to be thinking clearly. The next morning, day 7 it was gone, and so was my speech. The neuro quickly admitted me basedon the care needed and suspected ADEM. I spent 5 days on the roids 1000mg a day. I had a spinal tap done. I had 3 more mri''s. I would get extremely aggiatated. After the 5 day treatment I went up to the rehab floor, spent 3 weeks there. I continue to get better with therapy. I feel blessed that my arm has returned, i still get tremors and it gets tired easy. I need to work a bit on the fine motor finger movements. I get tired really easily. My vision is better but still distorted. My memory is a little bad, i have trouble with multitasking. My neck is troublesome on days now, often when I get really tired or stressed it gets super tensed and stiff, causing in most cases a headache which is all new. My cognitive abilities are of a concern, most of the lessions were in my frontal lobe, which with my behaviog has raised concern about my impullsiveness and frustration/anger. My visual perception is also off along with my processing speeds (exremely low). I continue to get better every day and can only hope and pray that we all have an acceptable recovery.
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Re: Recovery from ADEM

Postby Lauren » Tue Mar 31, 2009 1:42 am

My 17 year old daughter Ariel developed a headache over 4 days with some nausea and vomiting. I felt that she was developing migraines due to recent cessation of oral contraceptives. I planned to call her MD the next morning but that night while I was at work ( I am a registered nurse) my son called saying she was very confused and had severe head pain. On January 28th she was taken to the emergency room where a spinal tap and CT was done to rule out cerebral bleed, meningitis etc. Her tentative diagnosis was viral encephalitis and she was put on intravenous acyclovir. She minimally improved. The pediatrician was going to discharge her after six days but I pushed the issue and an MRI was done. He then called me to the hospital to tell me my daughter had Multiple Sclerosis based on the lesions found throughout her brain via the scan. The spinal fluid was unfortunately not sent for culture immediately and after a 3 day delay I was told it was negative for HSV anyway. We were sent out the door on February 4th with some low dose prednisone and vicodin for pain.
On February 6th she deteriorated again and was taken to a larger regional hospital with severe headache, vomiting, lethargy and confusion.
I had, after her discharge from the first hospital, done some research and found the ADEM information by questioning what could resemble multiple sclerosis on MRI. As a nurse for 20 years I had never heard of MS presenting with headache, nausea and vomiting plus the profound confusion she had.
At the regional hospital the ADEM diagnosis was posed as the most probable diagnosis based on clinical presentation. She was also tested for Lyme disease, Lupus, B12 deficiency and a host of other things.
She was placed on high dose Solu Medrol and improvement was seen in 48 hrs. After a week of this she was moved from the neuroscience floor to the rehab floor where she was placed on oral steroids. She crashed and burned in 48hrs. Plus she had a bladder infection. She was sent back to neuroscience and then to ICU due to her agitation and pain. She received her first dose of IV immunoglobulin there and was flown via Mercy Flights to Dornbecher’s Childrens Hospital in Portland on February 18th .
When she arrived she was weak on the right side, had ptosis of the right eye, dysconjugate gaze, profound disorientation and hallucinations. She couldn’t stand or walk and was incontinent of urine.
After four more doses of IVIG (immunoglobulin) she improved significantly and was discharged home on February 24th . Although cognitively she was still fuzzy with memory loss and some trouble word finding she was pain free and could walk with only a minor wobble. She was put on a slow prednisone taper starting at 60mg for 2 weeks, 40mg for 2 weeks etc. Occupational and physical therapy was started.
On March 13th she had an episode of urinary incontinence in broad daylight and appeared ‘checked out’. The neurologist felt that this was evidence of complex partial seizures and started her on Keppra 750mg BID (twice a day).For the next few days she had a return of headache, lethargy and confusion. On March 17th she got a dose of IVIG in out patient infusion services and could barely walk, being down mostly on the right.
On March 18th she was so obtunded I had to use noxious stimuli to awaken her and she again went to the regional hospital and received four more doses of IVIG. She also had a 4 vessel cerebral angiogram to rule out vasculitis. She was discharged on March 22nd.Her cognitive deficits seem to be much worse this time than with the last discharge. A follow up with a neuroimmunologist was done to rule out MS.However this MD, Dr Michelle Mass at OHSU didn’t feel that Ariel’s second ADEM episode was a relapse since she had never been off of steroids and the interval was so short.
She has significant cognitive deficits. Her short term memory is extremely poor. She doesn’t read anymore. She tried to put tea bags in her bowl thinking they were cereal. She has trouble with the simplest things like her shoelaces or getting dressed. She gets the month, year and day wrong. She can’t subtract 3 from 20. Her gait is wobbly. She has had numerous episodes of urinary incontinence. She appears depressed.
Four spinal taps and several MRIs have failed to yield any other diagnosis but ADEM. Thankfully I was finally able to afford to add her to my health plan at work in October. Our medical bills are approaching $200,000 and I have lost the equivalent of one months wages by missing work to be at her side.
She has been blissfully unaware of her deficits and has shown little insight into this 2 month long nightmare until today. With tears in her eyes she asked me “ Mom am I ever going to be like I was before?”
I felt like someone had taken my heart out with a claw hammer.I don’t know if she will ever be able to have a job or career, drive a car or be able to emotionally absorb all that happened to her.
Interestingly she received 3 vaccinations in November. Human papilloma virus, meningococcemia virus and a flu shot. She had no pre existing illnesses and was always very healthy.
Incidentally my 33 year old son sustained a cerebellar hemorrhage at the end of last June. He suffers from ataxia, headaches , vertigo, memory loss and fatigue. No abnormal vessels were ever found to account for this 30 mm hemorrhage. We are trying to get him disability but have already been denied once.
As a single parent without child support I am facing a total financial meltdown. However my personal faith has sustained me throughout all of this.I hope for the best but try to prepare for the worst.
I hope Ariel’s story adds another facet to this interesting and unusual disorder. I am open to any suggestions, insights and hope etc. After reading numerous peer reviewed papers on this disorder I have been able to educate other nurses and even a few doctors who have only read of this condition in medical school.
Thank You for allowing me to share this.
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