Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM Overnight


#1

Hi, I was diagnosed with ADEM in May and I literally went from sick with a cold to paralyzed from the neck down in a couple days. I haven’t seen anyone else with this type of symptoms here. Is there anyone else with this type of onset? I am walking and moving fairly well now.


#2

My daughter wasn’t not sick at the time of her ADEM. She came down with a high fever and within 24 hrs she was lethargic and not waking to eat or drink. By 48 hrs she was not waking when people entered the room and no taking notice of changes going on around her. She was 18 months at the time so it’s slightly different than adult symptoms. But day 3 it was starting to effect her respiratory function and we where moved to picu. They started her on iv steroids and within 24 hrs she started regaining functions slowly. However, our overall hospital stay was a total of 9 days so she could continue high does of iv steroids. ( we are under the impression that hers was caused from vaccinations, she was 4 weeks post vac and she had not been sick otherwise)


#3

That is exactly what happened to me! I was diagnosised in 2016 (I got sick in November). I am a 38 (now) year old female who is a practicing attorney. This thing really messed with me. I am walking and talking now, but ADEM makes it impossible for me to go back to work, full time, in such a stressful job.


#4

I don’t work any more but I’m 57 now so it’s fine with me. It’s nice to meet a person that had it the same as me.


#5

I am glad to know that it is not just me as well! The illness is so rare and the way it happened seems so different than others, its seems incredible that 2 people had the same thing happen the same way. I spent 5 months in the hospital. You’re fortunate you did not have a longer stay! You must have had good doctors. It took 3 months for me to even get a diagnosis, all the while my MRI’s were getting worse and worse. I ended up having plasma exchange (twice), chemo (and lost my hair), high dose steroids, IVIG, 6 MRI’s and 4 spinal taps! I am still not sure what worked, but I can walk, talk, type, and raise my two boys (who are now 6 and 7). I still struggle with depression and anxiety as well as dizziness, shooting pains in my legs and numbness in my hands. I really hope these things can be managed or even go away! Does anyone know what can help? It’s becoming more and more difficult. I am not sure if it is getting worse, or if I am just getting tired of dealing with it…


#6

Yes! My husband’s onset was this exactly. Started with a headache and mild allergy symptoms within 3 days he was paralyzed from neck down, intubated and in a coma for a month. He was given high steroid doses and tapered them for 3 months along with PT. He has since had a full recovery. Thinking of you!


#7

Hi Leslie. I had a bad cold then a bad flu then ADEM and I couldn’t feel my right side from the neck down or read or write. Then I got steroids and got a lot better fast. Now I am in recovery for five years and a lot better and still have room for improvement too.