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Anyone else had ADEM? (Acute Disseminated Encephalomyelitis)

SunshineLouSunshineLou Member Posts: 93 Pioneering
edited June 2018 in Disabled people
I suffered from ADEM (Acute Disseminated Encephalomyelitis) in 2014. It’s a very rare Neuroimmune disease. Extremely similar to MS but a severe one time attack. 
I have Brain and Spinal cord lesions with extensive Myelin damage. 
Wondering if there are any other members who were affected by the same condition.
ADEM is most prevalent in children. Approx 4 in a million. As an adult sufferer, I’ve been told, I’m about 1 in 4 million. 
Its also grouped with other conditions such as TM (Transverse Myelitis), NMO (Neuro Myelitis Optica) etc....


  • CaderMacCaderMac Member Posts: 105 Pioneering
    Hello @SunshineLou! Thanks for sharing some information about your condition. 

    There are lots of users on the Community with rare conditions and some may even have simialr experiences to you. I'm going to have a nose through some conversations now to see if I can find any posts/discussions about ADEM :) 

    Have a lovely day :smile:
  • CaderMacCaderMac Member Posts: 105 Pioneering
    Perhaps the Neurological conditions discussion page might be a good place for you to start? 
  • SunshineLouSunshineLou Member Posts: 93 Pioneering
    Thanks @CaderMac, I did have a quick look on there and didn’t see anything.
    Not too fussed by that though. It’s just nice to have a place where people understand about disabilities!

    Thanks very much for your replies :) 

  • CaderMacCaderMac Member Posts: 105 Pioneering
    You're very welcome @SunshineLou and you're absolutely right - there's a whole host of friendly conversations going on and stuff to get involved with all without any judgement or stereotypes. 

    Enjoy getting to know the community and let me know if I can ever be of any help x
  • MatrixMatrix Member Posts: 3 Listener
    Many of the folk with Lyme disease - mostly undiagnosed - by the NHS - but confirmed with private testing have neurological issues. There are Lyme groups on Facebook where you may well find others with very similar issues. For some unknown reason Lyme disease is a very much ignored issue, and it is very difficult to get proper investigations and treatment without going private

  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Thanks for sharing this with us @SunshineLou, I hadn't heard of ADEM before so it was really worthwhile learning more about it. I wonder whether this ADEM support group might be of interest?
  • SunshineLouSunshineLou Member Posts: 93 Pioneering
    edited June 2018
    Thanks @Pippa_Scope!

    Really good of you. Im
    already a member of that group but there’s so few people on there.
    I was a member of a Facebook group but had to leave. Unfortunately people with brain injuries can be quite hard to deal with sometimes.
    People often had a go at me for comments I made. It’s like they took them personally and didn’t actually understand my points.

    Such a shame but oh well.... x

  • SunshineLouSunshineLou Member Posts: 93 Pioneering
  • Sarah106Sarah106 Member Posts: 1 Listener
    Hi SunshineLou, I’m very new on here so just finding my feet 🤪 I am a ADEM sufferer, had it when I was 15 I’m 49 now. It can be a very lonely illness as there are so few of us. Happy to chat anytime, sending hugs 🤗 xx

  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hello @Sarah106! I just wanted to say welcome to the community. I hope to see you around getting involved in lots of our discussions. Please let us know if you have any questions or need help with anything. :)
    Senior Community Partner

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • mattcarbymattcarby Member Posts: 1 Listener
    Hey SunshineLou! I am a 38 year old male that was diagnosed with ADEM 3 years ago in 2017. You are correct, in that the probabilities of that autoimmune occurring in an adult are astronomical. 

    Same brain and spinal cord lesions - was told by a top Neurologist in Dallas that it would recur. My Oklahoma City Neurologist wasn’t very helpful either (outside of the steroids she gave me during the acute phase). I was in a wheelchair for a short period of time, had double vision (the worst), and a few other unmentionables that I’m sure you may have experienced. 

    All being said, I went in an entirely different direction in functional medicine (Lyme, toxins, gut, deficiencies, stress - I was a wreck) and would say that I now feel better than ever and have only unnoticeable traces of the event left to heal. It wasn’t an easy process, but much easier than committing to pills and declining health over the rest of my life. 

    Would love to hear your story.

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