Im 29 years old- just recently got diagnosed with ADEM a couple of months ago. It started with being unable to urinate, and then going into respiratory failure. I spent many weeks in the ICU ( intubated) and then the hospital floor. I just completed 7 weeks in inpatient rehab, and am finally home doing outpatient rehab.
There have definitely been improvements. My short term memory was impacted, however has improved drastically.
As far as my mobility, I became paralyzed at the T4 level. Initially, I had no feelings below my waist- however now: I am able to contract my stomach muscles, my trunk has engaged and that has helped me a lot with balance.
I've started to feel even light touch and water on my legs. I have a lot of burning and spasm. I am now able to connect my mind with my legs and toes.. and when I try to move something I feel a stretch or strong sensation in that very area. I have been able to move a couple toes a few times , however it is not consistent.
i started robotics therapy last week, and am hoping that it will help regain my mobility.
Everything I have read about ADEM, shows a positive prognosis for regaining mobility. I am however nervous and scared about all of it.
I'd love to hear from anyone who has had this experience, and how your recovery evolved. Also, I'd love hear about anyone that had the opportunity to do robotics, or any other interesting and beneficial therapies.
Welcome to the club! I know, that's not really a happy thing, but having this place to share notes is a good thing. I have found this rare disease to be very isolating, so I'm glad you've decided to share.
My feeling came back quickly, but some of the communication between my brain and muscles is gone. I have no sensation of being full, and so I really have to monitor food intake. I still have to really focus to urinate - sometimes even coaching my bladder to release.
About 1 year after my "attack," I had my first pain in my legs from climbing stairs. It hurt like crazy, but it was exciting, so yes, I believe healing continues. I have seen a counselor to help with this life-changing event, to get "tools" to help deal with anxiety, frustration and impatience.
I'm 1 year, 4 months out from my "attack" and I cannot work - not yet. I'm hoping to be able to return in a year or so. And judging from the healing, I'm hopeful.
Keep the positive outlook and give yourself a break. As my neurologist says, "You broke your brain. It's going to take time to heal."
Hello, it sounds like your hospital stay was similar to my son's. ICU 5 weeks, intubated for 4 (but then needed a trach) and inpatient for 6 or 7. He continued with almost 1 and 1/2 years of outpatient although we took a couple months off in summer. It will be 2 years for him in June. He came home from the hospital in a wheelchair and learned to walk within a few months after that. I would say he now has full mobility although still some minor small motor awkwardness. He was far more uncoordinated just a few months out like you are. Things will get better!
Also, he would probably be almost 100% with mobility but he happened to form bone around his hips while he was comatose in ICU. We are having surgery for that this month. It makes him walk kind of bent over. I think you will slowly regain all of what you lost but it takes time. Are you in outpatient rehab?
one of his bigger issues is urinary. LauraK described what I noticed with my son - difficulty emptying bladder and he happens to be totally incontinent at night. I know we need to start addressing that.
What treatments did you have in the hospital? My son had steroids, IVIG and plasmaphersis.
I had steroids and antibiotics. That's all I know about. The incontinence at night only lasted a week, but it sounds like I had a "lesser" attack - or maybe we caught it quicker, or God only knows why. I think it will get better. Keep hoping and praying.
Does anyone who is posting, know what caused their ADEM? I am still looking for answers and the Neurologists I have seen have not told me very much. It took months to rule out MS. All I know about ADEM is what I have read. This group, who have experienced symptoms are going to be very beneficial to me, I think.
Hi Laura, thanks for answering. I'm not sure why it seems my post looks like a response to your post. I was trying to reply to the original poster about what treatments she had in the hospital. But thank you for giving me your answer. Yes, always keep hoping and praying! take care!
LauraK said:
I had steroids and antibiotics. That's all I know about. The incontinence at night only lasted a week, but it sounds like I had a "lesser" attack - or maybe we caught it quicker, or God only knows why. I think it will get better. Keep hoping and praying.
Does anyone who is posting, know what caused their ADEM? I am still looking for answers and the Neurologists I have seen have not told me very much. It took months to rule out MS. All I know about ADEM is what I have read. This group, who have experienced symptoms are going to be very beneficial to me, I think.
Sonie. My husband's ADEM was from the flu shot he received in Oct. '12. He started having symptoms w/in about 2 weeks of the shot, although we did not recognize what was going on for over a month as it was subtle. It seems that others had very dramatic events, but my husband just thought he was experiencing vertigo. By January '13 he was in a wheelchair. I understand it can be from viral infections too.
Thank you, Sweetie Pie. I was told a test for Parvo Virus came back positive. I was also put on antibiotics for that. Felt more like a Strep Infection to me. My symptoms cleared up while on the antibiotic. I have experienced weakness in one calf and my shoulder. Working with a P.T. currently on strength. In the meantime, they are also looking at an infection again. Considering I was not put on something strong enough in the first place to kill the infection I was fighting. I too need a wheelchair to go long distances, but I have built up enough strength to use a walker at home.