Hello all, my first post

Hi guys,

I was diagnosed with ADEM in sept 2014 at the age of 34.
I was rushed to A&E after a four day severe headache.
I couldn’t wake up properly, was slurring my speech and unable to walk properly.
On arriving at hospital I’d lost the ability to breathe for myself and was ventilated.
I spent three weeks in a deep coma. I didn’t respond to any pain stimulus tests and the Drs gave my family and boyfriend the news that i had a 20% chance of survival.

When I awoke it was shocking to the consultants.
I was completely paralysed though.
I spent four months in hospital in total.
I slowly regained movement and some feeling in my body with massive doses of steroids.

I’m left with physical disabilities, many new health problems. Impaired memory and cognitive function. Brain and spinal cord lesions, balance problems, fatigue etc etc… The list goes on and on.

Life is just existence now really. But my kids still have their mum and my boyfriend is now my husband.
I can’t really complain but it’s still hard going.

I’m human and I mourn the old me every single day.

Thank you so much for sharing your story. My son aged 31 at the time was diagnosed in April 2015 and is still in recovery. Our neurologist thinks it will be another year before he recovers. Our neurologist is expecting a 100% recovery. But his case was very severe and his lesions only stopped growing after steroid treatment, 7 plasma exchanges and 7 chemo treatments. Just hang in there with ADEM there is recovery but it is just extremely slow. I have watched so many documentaries and read so many books about brain injury and there is recovery. The body heals itself but the brain just takes longer especially in adults. Children heal faster than adults. We see slow constant improvements. My son had extensive lesions on the left side of the brain and as unable to read or write. He could not walk, did not know who we were but we see improvements on a monthly basis. He is just starting to read and write now but it is going very slow. He is still at a cognitive rehabilitation center and they see an improvement in him as well. Exercise helps with recovery from brain injury as well ,so he goes to the gym five days a week. I read of a 24 year old that took 5 years to recover fully. She said she was 100% recovered. There is no cut off point with regards to recovery from ADEM according to our neurologist… I pray that you get better and just celebrate all the slight improvements.

Hi Sarah,
I wish I could exercise. Before ADEM I was a regular skier, swimmer and cyclist. I was about to start my ski instructor training two weeks after I was admitted to hospital.
Now I have a condition called Increased Tone. My leg muscles are always tense so even walking a few minutes is hard and hurts. They feel like concrete!
Also I have pins and needles 24 hours a day in my feet and lower legs. Spasms are a daily occurance too. It’s not good news at all and my Neurologist says I may need Botox in my legs at some point.
Also, because of the Myelin damage I’m very slow with walking. I can’t run, I can’t jump. I can’t lift my legs more than a few inches off of the ground. Nothing works in me anymore.

I take Pregabalin and Baclofen every day for nerve pain, spasms and the increased tone. Doesn’t help much though.
CBD gel tabs I buy for myself seems to help more than my prescription meds do but here in the U.K. They only prescribe CBD spray for MS.
Annoying because ADEM is so similar!

I do pray I will recover 100% but it doesn’t feel like I will. Over time I seem to be getting worse. This time last year I was more able than I am now. I keep having MRIs to check for new lesions but no more so far.

Hello, Did you do the steroids, ivig, plasmaphereses to get rid of the lesions? my daughter was diagnosed with ADEM and then after being sent to stanford in Palo Alto Ca she was diagnosed with Susac Syndrom. We were told that all of the treatment she had done was what you do for any autoamune.

Hi Sunshine.Lou I know every patient is different with regards to recovery and it depends where the myelin has been damaged. I have read a blog a while back but could not find it about someone that had ADEM and recovered 100% after 5 years. Our neurologist believes there is no cut off point from healing with ADEM. Not sure if you listened to these podcast but I found them very informative and it gives me hope with regards to my son’s recovery. Here is a link to that podcast. Learning about ADEM -
This podcast is very informative and encouraging. The other podcast I found interesting that can help hopefully is;
Role of rehabilitation
https://myelitis.org/living-with-myelitis/resources/resource-library/ (Activity to help myelin reformation and building muscle strength. ) There are alternatives if you cannot use your muscle hence (FES) Functional electrical stimulation. Hopefully this documentary will help. Our neurologist also emphasizes reading as much as possible in order to improve cognitive function. I will make a special prayer for your continued healing. All the best to you.

Thank you so much for that info.
I’ll look into it now. I had no idea that myelin damage could be improved.

No one has ever mentioned it to me at all let alone told me it can get better.
To be honest the more I read the more I’m realising my Neurologist isn’t as good as I thought he was :frowning:

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Hi Lagerton1,

I’ve never had ivig or plasmapheresis.
Steroids were orally and only after about 6-8 weeks into my stay in hospital.
I’m beginning to wonder if I’d have made a better recovery if these had been tried on me and if they’d have started Steroids earlier…
Suppose there’s no point wondering though. Can’t change the past and all that x

I failed to mention that our neurologist also encouraged us to use biotin supplements and vitamin D. Please check with your neurologist to get his opinion first. The research indicates that biotin helps with remyelination. Biotin - http://www.medscape.com/viewarticle/844018. The research also indicates that individuals with a vitamin D deficiency are more likely to get brain related injuries. In the podcast Understanding Research https://myelitis.org/resources/understanding-types-research-adem-nmosd-tm-including-afm from Transverse Myelitis. org site talks about the potency and brand of vitamins used in studies do not always correspond to the ones we may use. I just think we have to research the brand and purchase it from a reputable health store.

Here is the link to the resource library. There are many other information resources. https://myelitis.org/living-with-myelitis/resources/resource-library My son’s recovery is very slow but there is constant improvement. Wishing you everything of the best.

Thanks so much for all that info!

My Neurologist had me tested for Vitamin D and I have very good levels apparently. That’s probably because I’ve been taking supplements since being in hospital. 4 months with no sunshine isn’t good for anybody!

I’ll definitely look into the Biotin thing too.

Lou x