Acute Disseminated Encephalomyelitis (ADEM) Support Group

Getting sick while recovering from an ADEM attack

Hello everyone,
I have been diagnosed with ADEM in March 2019. The symptoms started days after I received the chicken pox and hep b vaccines on February 9, 2019. I became paralyzed from my waist down, my right arm and lost vision out of my right eye. Fortunately I have started to walk again without a device, my right arm is fully functional and my right eye has improved but my vision has definitely changed. Cognitively, I am still very much recovering. My memory isn’t well, my mood changes a lot, I am very forgetful and I can’t multitask at all.
Two days ago I started getting a little stuffy and a cough which I thought oh it’s probably just allergies. I am now second guessing myself because the cough is getting worse, I’ve made a doctors appointment but I just can’t keep thinking that I am going to end up in the same boat I was in on March 16th. Has anyone else gotten sick/caught a cold since being diagnosed?
I’m on 7.5 mg of prednisone, along with gabapentin, celexa, Trileptal, baclofen and flomax.

Hi! I was diagnosed with ADEM 2 years ago and was paralyzed from the neck down. It started with bronchitis. I am fully functional now except for wobbly legs when it’s hot out or I am tired. I also have pain in my legs every day. I had bronchitis again about 4 months after my diagnosis but I was ok after a course of antibiotics. They say it can come back but it’s pretty unlikely, especially after 2years. Good luck!

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Thank you!
I am so hyper sensitive now when it comes to my body. I am going to go get checked out regardless just to put my mind at ease. I know that the attack shouldn’t be what I mainly think about but it is, it’s like it’s taken over my life. I’m trying to work through this and I’m so glad I found this website.

Hi Cindal,I was diagnose in May 2013. We’ve all gone through what you are going through in one form or another. Each person’s symptoms are different depending on where the ADEM attacked. My whole body was numb (pins and needles) from my neck down and I lost all function of my hands, so much so, that I had to learn to use them again. I consider myself lucky, because my condition was not nearly severe as some. Compared to Day 1…I’m doing great. Yes, some things are different for me, but I can’t complain. We can get better, BUT, it is a slow process for most. Keep thinking…how am I as compared to the day of diagnosis. How am I as compared to a month, week or even yesterday. Take each and every little improvement and celebrate it. Stress is the worse thing for us. Take one day at a time. Keep asking questions or vent if need be. We are here for each other! Keep us up to date. Take care, Lynn

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I was diagnosed January 2019. Was in a coma for 2 weeks. On ventilator and had a Trach. This happened after a viral URI. When I woke up I was completely paralyzed. Was in hospital for 2 months. I’m pretty much fully recovered at this point. I still have muscle fatigue (swallowing, things that involve repetitive motion) and some spasticity in legs. I asked my neurologist to order some blood tests that I had read about (MOG and AQP4). Which basically tells you the likelihood of recurrence. Mine were both negative. Thank god! I had another URI a few weeks ago which i felt worse with this one then the one previous to my ADEM attack. Had I not had those blood tests I probably would have been a nervous wreck. I did check my temperature constantly and instructed my family if I got a fever or any slight cognitive impairment to take me to the hospital. I had no increase symptoms other than a normal cold, but I understand the worry.

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Nickey,

ADEM typically does not return, however, we all tend to have some type of disability. Mine for example, is my hands. I have permanent pins and needles from finger tips to my wrist in both hands, 24 hours per day. My major motor skills are fine, but my feeling is distorted and the fine motor skills in my fingers, are problematic. My personality is somewhat different, however my husband says I’m still livable. Where I could really multi-task before, it’s more difficult. I prefer to accomplish a task before I start another (not always possible). I tend to lose my words sometimes. I used to see in gray; now everything is black and white. I’m more emotional. Here’s the most important point…Compared to when I was diagnosed…I’m doing great!!! Take one day at a time. Celebrate each and every improvement, as healing is slow, but possible. Remember STRESS does not help us, so try (not always easy) to avoid it. If you simply need to vent…we are here for you. Take care,

Lynn

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I had an attack of ADEM, and while my story is similar to all of yours, I consider myself lucky to even be alive. I was 65 then and 75 now.

I received compensation from the US department of human resources because my ADEM was a result of my annual flu shot.

Although I was forced to retire from classroom teaching, nowadays I am able to tutor, which not only keeps me connected to what I love to do–teach–it also distracts me from my daily chronic abdominal/pelvic pain which is a residual from ADEM.

Thank God I have a wonderful husband who keeps me going physically and mentally.

Thanks for listening to my saga, and here’s wishing everyone gets relief and joy soon.

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