Hi im scott 35 from the uk
was all fit and healthy till 2 weeks ago
when out of nowere at work i lost complete feeling in my right side.
Was rushed to hospital with a suspected stroke
after ct scans.mr scans.etc they have said it a rare disease known as adem… didnt have a clue what it was. Neither did the doctors really.so here i am back at home walking about just finished my steroids.still quiet a bit of numbness.
so hopefully will start to get back to normal soon . Just waiting for my lumbar punch results.said another couple of weeks …
Hi Scott!
I am surprised it took them such a short time to say ADEM is what you have. I too was in great shape and healthy. My symptoms were different than yours. It started with weakness on my left side. From facial muscles on down. Very weak in my leg. Calf muscles especially. The first Doc I went to said Stroke. I did not think so. The next Doc, said MS. Once again, I did not think so. That was 7 years ago. I have been diagnosed with nothing except MS which they are starting to NOW look at differently. Maybe it is ADEM. My symptoms started after a Strep Infection. Possibly not a strong enough Antibiotic to kill it. In the mean time, I picked up a Parasite from Gardening. Soil Transmitted Helminth. My immune System went into over drive and here I am. The muscle weakness is better in my face. Not 100%. My calf muscle is still very weak. A walker is the only way I can walk. Now I hope the Doctors are really looking into what I have always wished they would have. ADEM. It happened once. No relapses. MS would have been much worse as an outcome. I don't take any meds. Only vitamins and supplements to boost the nutrients and protein I lost from the Parasites. My last LP was a ton better than the first scary outcome one. Moving forward from here I hope. I never did have numbness. Hang in there, Scott.
Hi Scott, I'm Lynn and I was diagnosed in May 2013. My case sounds similar to yours. I was hospitalized for 4 1/2 days of Cortisone IV therapy. That cleared 70% of my symptoms. I had to learn how to use my hands all over again. 2 years later and I am doing well, compared to 2013. I still have neuropathy symptoms in my hands and wrists, but I can use them again. What you need to keep in mind is this...ADEM recovery is a SLOW process. You need to have patience, but the prognosis is generally good for adults. Take each and every little improvement and celebrate it. I found for myself that good nutrition, vitamins and exercise helped improved my condition over time. I will include a couple of links that helped us. If you have questions or just want to vent...we're all here for you. Take care and get better...Lynn
https://myelitis.org/wp/wp-content/uploads/2012/10/Transverse-Myelitis.pdf
http://www.ninds.nih.gov/disorders/acute_encephalomyelitis/acute_encephalomyelitis.htm
http://en.wikipedia.org/wiki/Acute_disseminated_encephalomyelitis
Welcome to the group, Scott. You'll find many folks who've experienced similar surprises with this seemingly unknown illness.
Please feel free to ask us any questions and peruse the discussion page for previous comments. We lean on each other since only WE know what we've experienced about this crazy thing called ADEM.
Also know that everyone has a different experience, and most everyone has continued improving - even incrementally - beyond what the medical community has predicted. So keeping positive is a good thing.
Hang in there.
LauraK
They said is was Ms at first .but then changed there minds.
Did you have to declare Adem on your driving license,travel insurance,etc ? I’m in the uk so other countries may differ,
Just hope I can get back to work in next couple of week,not used to sitting about .but not a chance at the moment as I’m always tired .
Is there any meds for adem?
Thanks in advance scott
Most of the meds that I know about are for the initial attack. No we don't have to report ADEM on a license. Don't get upset if it takes longer to return to work. The tiredness is a part of the condition it seems. Most of us battle tiredness even 2 years later. Lynn
It started with numbness on both hands… Then mri, lumbar puncture (30 white cells in the CSF) so doctor pronounced MS. After 5 IVs of solumendrol things got a bit better but then deteriorated. Was admitted in hospital where a second puncture 2 months later showed only 3 white cells so I was diagnosed with ADEM… Recovery has been very slow… It was after two years that I started to see significant improvements. Dizziness still there when I walk… T
Do you find that eating right and mild excercise helps aid your recovery better?
For myself, I find eating right and taking vitamins (especially Bs, D, E & Fish Oil) help - when I remember. Exercise might be helping but mostly tends to exhaust me more.
I've only recently started trying essential oils but that's mostly to help my immune system which has gone into hiding since the ADEM attack 2+ years ago. I tend to take a VERY long time to shake any illness (I'm on month 3 of walking pneumonia right now).
Lauren
You have pneumonia now? Yuck...I hope you feel better!
My ADEM was brought on by a 5-month bought of bronchitis. I have severe asthma, and I'm prone to lung illnesses. Working on changing my diet to improve that. But it's hard. The ADEM residual exhaustion makes me crave sugar for energy which worsens my asthma and my already weakened immune system.
Take care of yourself....
scott said:
Do you find that eating right and mild excercise helps aid your recovery better?
The point is to keep up your immune system.
Well im trying to eat good.and as much excercise as i feel i can do .without over doing it.