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 skullcraker101 » Thu Nov 26, 2009 5:33 pm

i was dianosed with adem when i was in the milatry in march of 08. i spiked a temp of 105 and went into a coma they gave me little chance of sevival but i made it thought. now i am haveing problems converting short term memoy to long term memory. i am also having suvier pains from about the middle of my neck down, but i can not feal my skin and most of the musiles from that spot down. the only thang that helps with the pain is small amounts of achool such as wiskey or vokca is there any thing that may help with any of the above. these pains get worse in the winter. will
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Re: Recovery from ADEM

Postby marieke » Fri Nov 27, 2009 5:20 am

Have you tried Neurontin (gabapentine) or Lyrica (pregabalin) for the pain? Alcohol is not the best idea for use in pain control. It would be advisable to see a pain specialist as well.
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Re: Recovery from ADEM

Postby amyloohoo » Fri Jan 22, 2010 10:51 am

Hello,

My daughter was diagnosed with ADEM when she was 2 years old. She is now 14. I was told a full recovery was in store....we are still waiting. She is in Special Needs classes, uses a walker or wheelchair depending on the amount of walking, has severe balance issues, and has behavioral issues. She is in OT, PT and Speech. She just had surgery on her left foot because of weak tendons and it caused her left foot to turn in, and wearing a brace and therapy didn't work. We are also looking into counseling because she acts out physically on other students and keeps getting suspended from school.

What is being done for this illness? What kind of future does my child have? She is at a 9 year old level most days and it breaks my heart!!!

I feel for every individual that has been affected by this awful illness.

amy in Ohio
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Re: Recovery from ADEM

Postby kmsinlex » Tue Feb 09, 2010 11:42 am

kmsinlex wrote: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.

Here is an update on my ADEM that I wanted to post because I realize that while the experiences vary greatly, I also see many similarities. It is now almost 9 months since my symptoms began and my neuros still say the diagnosis is ADEM. Here is what I've observed:
- It is best to have a quick diagnosis, but this is often not the case since ADEM is so rare, especially in adults. I am 61 and my onset period was about 1 1/2 weeks. My GP prescribed a CAT scan of my head as a precaution and when it shown abnormalities, he followed with an MRI. It showed lesions in my brainstem & the C & T sections of my spinal cord. The biggest problem was getting to see a neurologist. During these weeks, I declined rapidly and (luckily) collapsed, was taken to the ER, and admitted to the hospital for 9 days under the care of a neurologist. This is a BIG problem! If there is evidence of brain lesions or high T cell count in CSF, then if someone doesn't get treatment, the damage will only increase. I don't understand why this isn't a red flag for faster neurological attention.
- I had heavy doses of steroids via IV in the hospital and have taken Prednisone for 9 months. My neuos prescribed them to be taken every other day for double the dosage, to try and minimize the negative side effects. They dropped the dosage and my symptoms got worse, so they upped it again. I am just now starting a two month tapering off schedule. This seems to have worked to some extent because I'm tolerating this fairly well. I have noticed some increase in appetite, a moon face, hair loss, and a rash on my palms. I temper the appetite issue by following a very healthy diet, high in fruits & veggies, which has helped.
- My particular symptoms have been all on my left side, with numbness, tingling, pins & needles from just below my shoulder to the bottoms of my feet, including my arm. I have burning pain and mechanical allodynia (hypersensitivity to light touch) on my left arm, hand, and torso. I've been taking Gabapentin for this and while the problem hasn't gone away, it is lessened quite a bit.
- Rest is essential. In my case, the Gabapentin makes me drowsy, so I sleep 10 hours a day, despite the Prednisone. If I get too tired or stressed or am too physically active, my pain flares up again. Good diet is critical. For breakfast I have a bran cereal, a banana, and green tea. For lunch, a salad or healthy leftovers. For dinner, a small amount of meat, lots of veggies, and a salad. For snacks, low salt crackers with low fat veggie cream cheese. I make ice pops with fruit juices and these are good snacks also as they take a while to eat.
- It's important to get some exercise but to not overdo it. Yoga and other stretching exercises are good. For me, a warm bath with Epsom salts helps mitigate the pain.
- I pick tasks around the house that I can break into small components and set a goal to accomplish something each day. This helps counteract depression.
- My neuros tell me that recovery is very long, especially given my age. ;-{ It’s very hard for me to see progress, especially since it's not easy to compare how I feel today to how I felt 4 months ago. I have to try and remember certain things, like I couldn't even climb stairs then, but I can now (slowly). I was in excellent health when this hit me and this has helped me. Focus on small achievements. I was discouraged since it has been over 6 months since I've had treatment, but my neuro said to cheer up, I'm only a quarter of the way thru recovery and from their view, I'm doing well.
- Each person's experience is a little different, depending on where the damage was done in your brain or spinal column. There are common threads, such as pins & needles, or a "banding" feeling, balance issues, or short-term memory problems. Recovery takes work and is slow, but it happens at its own pace.
- At my last appointment, my neuros were very happy because my latest MRI showed almost complete healing in the 3 areas that were affected. But, I said, why do I still feel so much pain? They told me that they have had many patients tell them that they feel neuropathic pain during the process of nerve healing, although this has not been well-studied. It was also explained to me that when there is damage in the brain and spinal cord, the signals to the neural network are affected. This, in turn, affects the peripheral nerves (those throughout your body) and physical changes occur in these nerves. After the brain and spinal cord heals and send out normal signals, the peripheral nerves are still affected by the changes. As I understand it, long term normalcy depends on how well these nerves readapt to the normal signals. I may or may not heal fully from my hypersensitivity and other issues on my left side. My Drs are hopeful and say to give it another year or year and a half.
I'm sorry for the long post, but wanted to explain what I've learned. It really helps to keep a journal, even an occasional notation on scrap paper, about how you feel on that date. When you read how you felt 4 months earlier, only then can you really see that you have made progress and this will give you hope.
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Re: Recovery from ADEM

Postby Shirley » Tue Feb 09, 2010 9:27 pm

Thank you for letting us know how you are recovering. It must have taken a huge effort to type such a long post. Well done.
You are well on the road to recovery, Marieke always says to keep a journal so you can look back on how well you have come. I must agree with her on that score as it is so hard to remember, as you are finding out. The brain fog wipes any long term memory!!
Keep posting so we can keep in touch.

Cheers
Keep well



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Re: Recovery from ADEM

Postby marieblond » Wed Feb 10, 2010 1:49 am

best quotients for brain training brings making music by yourself and playing chess. saw a special film on this topic.
That which does not kill us makes us stronger.
Friedrich Nietzsche
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Re: Recovery from ADEM

Postby sherrip » Tue May 04, 2010 10:53 pm

My sister was diagnosed with ADEM in December 2009. She was living in Virginia, with me in Texas. I drove there to pick her up and bring her home with me so I could take care of her. She had been in the hospital in Virginia for a week, and I was told she could walk 100 ft. unassisted when she was released from the hospital. That was not the case. Her right foot turns in almost completely. Her right hand as been affected as well. She can't use her right hand for anything. Her speech was very much affected and has just recently gotten better. She also drooled a lot, but that has stopped. She wears a brace on her right foot now and is starting to walk with a walker. If she does not have the brace on, her foot turns in and she is not able to put any weight on it at all. She has done well considering she was paralyzed on her right side and her bladder did not work. Her eyesight was never affected, just the right side of her body. Can anyone tell me if they had the issues she has, with the foot turned in and still not able to use her hand? She has physical therapy three times per week. She had an MRI today and we get the results on May 10th. She is hoping to return to Virginia and her job by June 30th. She must be able to use her hand and be able to walk unassisted to retain her job. Do you think we are being unreasonable to think this could happen? If you have had experience like hers, could you please let us know if we are just being too hopeful? She does have a good attitude and works hard to get better.
Thanks!
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Re: Recovery from ADEM

Postby Shirley » Wed May 05, 2010 1:03 am

Hi Sherri,
Everyone's recovery rate is different, no one can actually say 'when'. You are providing the enviroment for your sister to recover, with organized PT, on the days she doesn't go to the outpatient facility, does she do the perscribed PT at home? Fatigue is a huge factor in both ADEM and TM, she must rest when her body tells her.

I know very little about ADEM as I'm a TM sufferer, but they are so closely linked, as GBS (Gullian Barre Syndrome).

Please take care of yourself as well, remember, we must take care of the carers, as well as our patients.

Keep in touch, Sherrie.

:ymhug:
Keep well



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Re: Recovery from ADEM

Postby akjosh » Mon Aug 23, 2010 4:42 pm

Hi Sherri,

I had a very similar situation. No right side, limited speech. The right leg took about 3 weeks to work and about 3 months to work at about 90% of what it was, today a year and a half later its at about 94 %. I'll take it. During the first stages of walking I had my foot turn to the outside. I notices this and to much discomfort and pain I made myself walk correctly just for five feet, rest and repeat. I did this for 2 hours one night to try and correct the misdirection of my foot. It took a lot of attention and patience and the next day I was sore but it worked.The arm took a lot of work and time and to this day although I have full control it feels odd or different. I have trouble with the very fine motor skills and have mild tremors occasionally. Its fully funtional and nobody can ever tell unless I play any kind of sport at which i'm throwing. Its all getting better to this day, the finer the skills the more time it takes. I play guitar I love bluegrass and folk which requires a lot of picking from my right hand. It was really really fustrating at first but its getting better every month.

I hope and pray your sister has regained control and strength.

Best wishes,

J
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Re: Recovery from ADEM

Postby Chief » Tue Aug 24, 2010 11:52 pm

To share my experience:

My wife (25, Asian, now living in HK with me while we are both from the Netherlands) experienced some wierd, numb feeling in 2 of her figners on her right hand side and at the same time she had a feeling that her speech was a bit slurry. I did not notice at all but when I paid close attention, I found it she was right. We went to a GP who took it very seriously immediately. She sent us straight to an internist for the same day. The internist in turn send my wife to the hospital for MRI scan right away. The next day, we saw the dreaded scan with a big lesion on the left side of her brain. She was then put through a dozen of tests which all came back negatively. Our neurologist (who came in the picture 2 days after hospitalization) suggested that it also could be a tumor. Only way to find out was a biopsy. My wife bravely accepted that and undergone brain surgery within a week after the first day.

The diagnose at that time was MS. Although happy it was not a brain tumor, MS itself is chronical and therefore scary as hell. My wife was put on a high dosage of steroids to fight the lesion. She was sent home 1 week after surgery and was put on steriods for 1 week. After that, it seemed like her condition worsened and another MRI was done immediately while putting her back on steriods. This time, the neurologist was more confident in diagnosing ADEM rather than MS. She's still on a low dosage of steriods and we're seeing our neurologist every week as long as the medications are still needed.

I think the diagnosis of ADEM is more hopefull than MS although I am fully aware of the fact that it is common that ADEM progresses into MS. For the time being, my wife is recovering. Her speech is not 100% but went from 60% to 70% I would say. No real progress in her finer motor movements in her hand but that could also be due to the operation as sections of her brain were removed for biopsy.

This all happened within 5 weeks from today. My wife is brave and strong but I tell you, she's scared as hell. She can't use her right hand to write and while she is trying to regain that control, she also started therapy to learn writing with her left hand. The fatigue is there but not extreme. She took naps every day for the first weeks but this week it seems to be a little bit better.

We are extremely comforted by the fact we have the very best neurologist available to us and that he is really keeping us in the loop. Also, we are so lucky that our original GP took matters so seriously so that my wife had a diagnosis so soon after the first symptoms which is always good.

Reading this forum is somewhat comforting, knowing that there are people who went through the same or in some cases, even worse...! i'll try to share our experience and give some medical information which might be helpfull to others.
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Re: Recovery from ADEM

Postby babaloo5_ » Tue Feb 01, 2011 6:43 pm

i am so glad i found this site..on xmas day i took my wife to the emergency ward because of excruciating pain in her abdomen and a very bad cough that had lasted 4 days.they took a chest xray and some bloodwork(both negative) prescribed codeine for the pain and said you'll be ok in 5-7 days..she went back to work for 4 hrs jan1 and when i returned from work jan2 she was on the living room floor with no feeling in her legs .i called the ambulance who told her get up you have the flu and are hyperventilating.she threw up twice before the transport to the hospital where another xray showed nothing.they wanted to send her home even though she could not stand up and she tried to urinate 4 times but couldnt ..finally they kept her overnight.when i returned the next day the muscle seizures,slurred speech,hearing loss had set in,2 ct scans showed no stroke,she was put on viral and bacterial meds to cover all bases,an ecg showed some abnormalities but no brain seizures,the mri showed inflammation in the grey,white matter,the md said sodium abnormalities(i forget the term) which when the brain corrects itself is when all the damage is done,a very serious illness with poor prognosis,a 2nd mri a week later showed more inflammation in a different area which in turn narrowed the diagnosis to amed,the md and neurologist have never seen this in an adult ,thus it took awhile to get the proper diagnosis,her age 50 and constant good vital signs are their reason for a recovery,the tracheostomy has now been removed,she still has spike fevers that the md believes is coming from brain signals as all cultures come back negative,2 lumbar punctures,the 1st showed some possible viral infection,then the same fluid when cultured showed nothing,it has been 14 days since the 5 days of heavy steroid dose followed by strong but gradual tapering of the steroids,the therapists have been working on her muscle groups to regain tone after the seizure attacks (her hands and arms and foot dropping),her hands and arms are very loose but her achilles is still very tight as they try to stretch the shortened muscle for walking therapy,she cannot speak and conscienceness comes and goes,she is getting back some natural eyemovements but commands usually go by her,the md (who is respected) says once the inflammation goes down and the myelin regenerates(i read 1-3 mm a day) the diagnosis for getting all the wires connected(his laymens version) is good but as ive read on this site it is a monthly not even a weekly progression,she will nod when i show her pics of us but more demanding reasoning doesnt click yet,the md told me she will come and go in these moments,the emotional roller coaster of seeing a tiny improvement 1 day followed by nothing the next day is draining,they are putting her feed tube into her stomach this fri (safer than her nose in a long term case) and a 3rd mri hopefully this week also,depending on the comparative results of the mri's the inclusion of ivig treatment may be started,going from 2 weeks of please survive an undiagnosed illness to part 2 of hopefully clearing that hurdle and being able to enjoy your remaining life is the next trip,iwas told 2 yrish rehab (est,everyone is different,and after reading some of the trials and victories of others on this site ,that will be my positive reinforcement),your mind can play with you good and like all the other posters i just want my wife of 28 yrs back in my arms to enjoy life with,thank you again other posters and i truly hope you beat this illness and through the different therapies regain as much of your bodies back as possible,i will continue to read and hope and pray for other recoveries as well as post how my wife progresses,, ps, any other sayings for strength like the ..that which does not kill us makes us stronger ..would be great too...r.j
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Re: Recovery from ADEM

Postby aqua33 » Tue Aug 30, 2011 8:10 am

Hi,
I was 9 years old when i was dx'd with ADEM optic neuritis. I am now 38 years old so I have lived with the aftermath of this for many years now. Mine started when picking fruits with my family at an orchard. I picked up my little sister to cross the street when she pulled my sunglasses off my eyes then proceeded to put them back on when she stabbed the arm of the glasses into the corner of my left eye. The eye started to water so I rubbed it, of course with all that great pesticicde on my hands. I started to lose my vision a short time after that and within the week I was completley blind in my left eye. This is when all the action began. To make a long story short I spend many months in an Ontario hospital seen by many specialists, lost all my vision in both eyes, brain was swelling, had the priest visit me, was given steroids, lumbar needle, and the alternative of a brain surgery in new york. My parents went the steroid route. I began to see improvement after the steroids in my eyes thank goodness but the side effects were horrific for me and I still live with them. The weight gain was aweful, the stretch marks are all over my upper body, struggled with weight all my life now, lots of hair growth. They told my parents after age 30 i might develope MS. I have many problems with my nerves right now in my shoulders, arms and feet but my doctor doesnt seem to think its related which is a relief. When all was said and done, i was left with almost nil vision in my left eye ( its a giant haze and i can see outlines like a fuzzy tv), and my right eye I have to wear corrective lenses. I get headaches from straining or being out in the sun for too long with/without sunglasses. Driving scares me and always has. I have never been on any type of disability with my eyes. I wanted to be normal so I did just that. Sometimes I get eye twitches now but other than that the above is what I remain left with almost 30 years later. Most times I wish I was older to have understood more about what happened to me at the time so I could have better handled it. I don't think my parents went out on a limb nor did the medical professionals afterwards. I had no one to talk to nor did anyone help me with the after effects of this. I was basically sent home to live my life. It drastically changed my life and some sort of counselling or anything would have better prepared me for what had happened to me. I don't blame anyone, but the reality is I was a child who was blind and although they helped me physically the mentally was left out. Ont, Canada.
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Re: Recovery from ADEM

Postby Shirley » Tue Aug 30, 2011 10:49 pm

Such devastating stories, they are like a bad dream.I truely hope everybody has had some improvement in their conditions, since the writing of these very sad stories. As a TM'er I have no experience in ADEM, I know it's a cousin of TM, MS and probably Guillian-barre syndrome. Just remember, we must care for our carers who are watching their loved one struggle with this miserable illness.

We are here for you, to rave at, to vent at, or to hold you in our imaginary arms to calm you.

:ymhug:
Keep well



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Re: Recovery from ADEM

Postby mrswilson » Thu Nov 24, 2011 8:37 am

I had flu like symptoms that turned out to be ADEM, unknown cause abd unknown prognosis. This was back in November 2003. I have a degree, but am no longer able to access the parts of my brain efficiently due to the poor executive functioning I still suffer. I have spent 3 years in intensive neuro rehabilitation centres and still see Headway, a brain injury charity, every month, I have a PA on Mondays, who assists with day to day tasks, shopping, hospital apts etc. I have chinese herbal therapy, acupuncture every two weeks, art therapy every week and attempt working part time on the checkouts at a supermarket. I was very athletic before my illness and had a full time job in the media. The lack of ability and my insight into the whole enccephalitic episode, have all but ruined my life, or at least will to live it. To realise that one has lost so much and left with a fraction of what was there, is the hardest lesson.

I still suffer with leg spasms, but my GP prescribed Mirapexin 0.088mg x2 per night and this has stopped them almost completely. I have also been prescribed modafinil 100mg daily, this helps me wake up properly and aids concentration and fatigue. I highly recommend acupuncture as a relaxation therapy. Exercise is good, if you can. I try to jog and run when I have the energy, as this releases endorphines and helps me feel a bit better. Lumosity is a very useful site if you want to test those parts of your brain that have been affected, it's challenging and fun! We all have to do our best because no one but yourself can do it for you!

I am on antidepressants again, but only a 20mg dose. ~Life throws some curious things our way, we just have to get on with it! Take whatever help is given and be grateful. :ymhug:
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Re: Recovery from ADEM

Postby mrswilson » Thu Nov 24, 2011 8:59 am

Mrs Wilson also needs to add that I have had botox injections into my bladder to stop me peeing myself and still have problems with my bowels too. Hand writting is bad too! I am very happily married now though, to a man who never knew Caryn Duncan pre-morbid! So I must be doing something right! :ymhug:
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