Discussions By Condition: I cannot get a diagnosis.

ADEM--Anyone seen this??

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • June 9, 2009
  • 02:14 AM

I was diagnosed with acute disseminated encaphalomyelitis in February of this year. My symptoms started in late January. ( I am only 23 years old.) I wonder if anyone else has or knows some one who has battled this disease, and would like to share their story?? I was treated with high dose steroids. It started with me just feeling off balance, my handwriting changed, had left-sided numbness, and my motor skills were bad. I was initially diangnosed with MS, but it was later changed to ADEM, after spinal tap and further MRI's. I became very lethergic, sleeping about 20 hours a day. It got worse to the point that I couldn't walk unassisted (i used a walker with help), some one helped me bathe, dress, and other daily tasks. I still cannot drive. My speech was very slurred and barely anyone could understand me. I either laughed hysterically most the time or cried just as hard. I could not control my emotions. The disease comes on suddenly. Mine was started by the Epstein-Barr virus. I am now walking, with some balance problems. I still do PT. I still have coordination problems and headaches. Fatigue is still an issue. As is occassional involuntary or jerky muscle movements, but I have gotten much better from where I came from. I am interested in any stories that anyone may have or if Dr. Cottle has seen this disease process and what prognosis he has seen. Thanks all!!

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8 Replies:

  • hello, my name is edgar, i have a son by the same name who is 33 months old who has recently been diagnosed with acute disseminated encephalomyelitis as well. Iam very scared about his condition. he is about two weeks into the disorder, is still in the hspital, and feeling what i hope is the worste phase of his condition. He usually is a very bright, well spoken kid and now is now bed ridden, and has lost total control of his right hand and wakes up at all hours screaming about his unbareable back pain. he is as you have discribed yourself in the earlier phases. I would like to talk to you so i know more about hat he is going through. please contact me. this is scary for everyone. especially my son. and because i can not communnicate with him as i normally do. I would greatly aprecciatte your responce. you can contact me at gonzalez2nd@yahoo.com. thank you so much, i am greatly looking forward to hering your response.
    Anonymous 42789 Replies Flag this Response
  • I am a 35yr old was a very healthy male with no health impairments. On Nov. 3, 2009, I was infected with Viral Meningitis. 3 days later I fell into a coma for about 3weeks. My wife begged drs. to do a MRI during the third day as I was going unconscious. They said it was nothing but lethargy and the spinal tap showed no negative results. My wife got our lawyer involved at which point they finally did a full MRI and found my brain and spine glowing like a Christmas Tree meaning quite a bit of my mylen was gone. That's when they diagnosed me with ADEM. When I awoke I was a quadraplegic for 3 weeks and then a parapalegic for another 6 weeks. I finally came out of the hospital in the end of February 2010 at which point I had been at 3 hospitals and 1 in-patient rehab. High steroid tapers worked for me. During this time I had lost control of my urinary and bladder functions. Lost of feeling, was on a foli catheter for some time even after I got out of the hospital. I still have urological issues but things are improving. Docs say this is the last to come and can take long. Unfortunately I still wear Depends diapers due to not being able to control my urinary functions. As well impedence is still an issue. However all this seems to be improving which is a good sign. ADEM is one of the worst headaches I have ever had. If I had a gun next to me I would have pulled the trigger to end the pain. That is how bad the pains are. I have gone through the guitar feeling down the back and now its gone. The worst is the burning and painfull sensation in my feet. As well as the minor back pain that still lingers. The oddest is my sense of temperature. In the winter I can walk out in a short shirt and not freeze. I don't have much temperature feeling or sensations. I get tingles. A fast tingle is cold and a slow tingle is hot. Odd. Overall my condition has improved significantly and if you were to see me you would have no clue that I am sick. Internally I am bad news. 2 weeks ago I relapsed again and my wife found me on the floor in the morning 3 hrs after I got up as I was getting out of bed to go to work. A lesion had grown in 3 days on my motor skills portion of my cerebellum. Just this past Friday I was delivered a blow in that my neurologist believe my ADEM has turned into a form of MS in which I have a good 15-18 yrs to live and will be relapsing throughout my sickness. Not good news but I made it through ADEM and I sure am not going to let MS take me. I am going to give this disease ***l and one way or another via beating it or dying will take this disease out. My prayers go out to all of you to get well and am here to support you all. This is such a life changing disease that in hours can take you for a whirlspin.
    Anonymous 42789 Replies Flag this Response
  • My daughter was 3 and a half when she was diagnosed with ADEM (or post viral encephalomyelitis) in May 2010 and had a recurrence in January this year. We live in the tropical north of Australia and she was badly bitten by mosquitos 2 weeks before she started displaying symptoms. These included extreme fatigue, removal from all social interactions incl with her 3 siblings, and regressions/failure in fine/gross motor skills, co-ordination, balance, language & speech, feeding & swallowing. She too lost control of her bodily functions and could be found wandering in an autistic state and eating weird things (like her own faeces). She also had episodes where she would scream in apparent pain and be impossible to settle but then would not register that she had hurt herself when she touched a burning hot BBQ plate which left her hands blistered and bleeding. AFter extensive testing incl lumbar punctures - we have not been able to ascertain what set this off.In January - still recovering from the first instance, her balance & co-ordination deterioated over a period of 2 weeks to the point where she could not walk straight and would stagger into things like a drunk. The only sign of illness at the time was a bit of swimmers ear.Recovery is terribly slow although recent tests at her preschool suggest that she is operating at the lower end of the Average spectrum.There is no way of knowing how long she will take to fully recover - or whether there will be another recurrence. I am now seeing a Natural Therapist to get her diet and immune system as healthy as it can possibly be in the hope that we can ward off another stint in hospital.
    Anonymous 42789 Replies Flag this Response
  • I was diagnosed with acute disseminated encaphalomyelitis in February of this year. My symptoms started in late January. ( I am only 23 years old.) I wonder if anyone else has or knows some one who has battled this disease, and would like to share their story?? I was treated with high dose steroids. It started with me just feeling off balance, my handwriting changed, had left-sided numbness, and my motor skills were bad. I was initially diangnosed with MS, but it was later changed to ADEM, after spinal tap and further MRI's. I became very lethergic, sleeping about 20 hours a day. It got worse to the point that I couldn't walk unassisted (i used a walker with help), some one helped me bathe, dress, and other daily tasks. I still cannot drive. My speech was very slurred and barely anyone could understand me. I either laughed hysterically most the time or cried just as hard. I could not control my emotions. The disease comes on suddenly. Mine was started by the Epstein-Barr virus. I am now walking, with some balance problems. I still do PT. I still have coordination problems and headaches. Fatigue is still an issue. As is occassional involuntary or jerky muscle movements, but I have gotten much better from where I came from. I am interested in any stories that anyone may have or if Dr. Cottle has seen this disease process and what prognosis he has seen. Thanks all!!Hey man, my name is George, I am 28 and I have just recovered from ADEM, I got it in November of 2012 after getting viral spinal meningitis. You should email me at massoud.george@yahoo.com if you want to know what I have to say, I'd also be curious of how exactly your medical treatment was. I was in the hospital for 45 days and in the ICU for 8 days in a coma, on a ventilator. I did a month of inpatient rehab as well, very similar to the other guy on here. I have started a website where people can share stories and advice as well, its called medicaladversityandrecovery,wordpress.com. Email me and we can talk, possibly on the phone. You're going to be ok, it just takes time. Hang in there!
    George Massoud 1 Replies Flag this Response
  • George, The website you listed has an error. This is corrected: medicaladversityandrecovery.wordpress.com
    Anonymous 42789 Replies Flag this Response
  • I was diagnosed with acute disseminated encaphalomyelitis in February of this year. My symptoms started in late January. ( I am only 23 years old.) I wonder if anyone else has or knows some one who has battled this disease, and would like to share their story?? I was treated with high dose steroids. It started with me just feeling off balance, my handwriting changed, had left-sided numbness, and my motor skills were bad. I was initially diangnosed with MS, but it was later changed to ADEM, after spinal tap and further MRI's. I became very lethergic, sleeping about 20 hours a day. It got worse to the point that I couldn't walk unassisted (i used a walker with help), some one helped me bathe, dress, and other daily tasks. I still cannot drive. My speech was very slurred and barely anyone could understand me. I either laughed hysterically most the time or cried just as hard. I could not control my emotions. The disease comes on suddenly. Mine was started by the Epstein-Barr virus. I am now walking, with some balance problems. I still do PT. I still have coordination problems and headaches. Fatigue is still an issue. As is occassional involuntary or jerky muscle movements, but I have gotten much better from where I came from. I am interested in any stories that anyone may have or if Dr. Cottle has seen this disease process and what prognosis he has seen. Thanks all!! My 6 years old son was also diagnosed with ADEM. He has been in ICU for 10 days and about a week in rehab center. He recovers about 90 percent, and is about to get home next day. He has **** on his left eye and mouth. He was treated with steroid and ivig, and trileptical to prevent seize although he does not seem to have seize except the **** on his eye and mouth ( 2 times). The doctors still want him on trileptical short some time, and this is my concern. You mentioned having involuntary or jerky muscle. Do you have to take trileptical during treatment and during recovery? Thank you so much.
    Anonymous 42789 Replies Flag this Response
  • My 6 years old son was also diagnosed with ADEM.; He spent 10 days and ICU and 7 days in rehab center. He recover about 90 percent when discharged from rehab. He was treated with steroid and ivig, and trileptical. I have question about for tkeys: you mentioned about involuntary and jerky muscle movement. Did you take trileptical for it? My son had jerks on mouth and left eye, and he did not seem to have seize. The neurologist test egg and confirmed no seize. However, they want him taking trileptical to prevent seize. He was still taking it when sent home and no other medication is needed. Follow up MRI is expected in the third wee. Thank you so much.
    Anonymous 42789 Replies Flag this Response
  • Hi My name is Jackie and I too have been diagnosed with ADEM in May of this year I am 66 years old and was in very good health before this and for the life of me can't figure out the cause but as it is I too was put on steroids and antibiotics after the MRI and stayed in hospital for two weeks and rebab hops for another two weeks . I'm feeling stronger everyday but I too have balance problems and bladder isn't working and have to wear depends. I still have burning in my torso and legs
    Anonymous 1 Replies
    • September 16, 2014
    • 05:37 PM
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