Acute Disseminated Encephalomyelitis (ADEM) Support Group

New member


#1

Hello Everyone,

I was released from the hospital the day before my 37th birthday. I was diagnosed with ADEM and had to stay for 8 days while receiving two different treatments (Steroids/IVIG). Honestly, I'm beyond confused about this disease and I'm left with uncertainty about my future. Here's a little bio about me.

I'm a healthy, active person who is conscious about what she eats and tries to avoid stress. I take my vitamins, drinks a green smoothies day, doesn't like fast food, and lives a really simple life with her boyfriend and cat. I barely get sick and when I do, I'm pretty good at recovering in a day or two. The last time I went to see a doctor was 15 years ago, until recently I got a full check up. Results came back - Perfectly healthy. I do suffer from depression and anxiety, but I do not take medication for it. There are threes vices I had - LOVES cheese (ate lots of it), I used to consume 3 cups of coffee a day and smoked - I quit all three vices about a month ago.

So how did I get ADEM?

October 30 - Had lots of stress at work (LOTS)

November 3 - Had a panic attack - felt a little sick

November 7 - family came over to visit (My niece had just gotten over a cold)

three days later - I got sick

November 18 - got bronchitis

November 19 - quit smoking

Thanksgiving week - Started to feel good, but noticed some weird things.

Vision started to get blurry followed by: dizziness in the morning, confused at times (felt almost lost)

Woke up one morning with my pants wet, noticed later that week that my pants would be wet while I was sitting at my desk, but I didn't feel myself peeing. Had trouble swallowing, it was more like a delay. (I had to think actually think about swallowing) My mouth would get really watery (lots of saliva).

December 8 - I was having difficulty speaking, couldn't write a sentence or an email. I kept asking my coworkers to help me.

December 10- Couldn't speak at all, it felt like my tongue was stuck. Went to the emergency hospital and was diagnosed with ADEM.

Now:

I'm having issues concentrating, writing sentences, reading for long period of time, reading comprehension, and memory.

I'm just happy to be alive, but still worry about another possible future attack.


#2

Welcome to the ADEM support community, Louise. Things are a bit quiet around here because of the holidays, but of course, being on the cusp of the holidays probably has you needing some emotional support more than ever!

Your bio is very interesting, but also a sad chronicle of the difficult time you've had lately. We're glad that you found us, and when things liven up a bit here, we hope that you will be too.

All the best to you and yours

Seenie


#3

Hi Louis, Hope you are slowly improving. Recovery is so slow this has been my experience with my 31 year old son. He had a very severe case of ADEM. He has been ill since April 2015 and cannot focus at all. He can recognize words but does not have the attention span to read. I try and remain hopeful but sometimes it is just so hard. His current neurologist said to prevent it from coming back we should make sure he is not vitamin D deficient. He must not get flu. We have managed to keep him well by proper nutrition. He predominantly eats fruit, vegetable and fish. He also exercises daily as it also helps build the immune system. But we are still a long way from his recovery. He is unable to work, do maths or read and does not understand much. You have to do your best not to get flu. He used to work very hard too and also suffered from depression not sure if this contributed to his attack. All the best to you. I pray that you get well soon. From what I have read the brain heals but it just takes time. Walking is also very good for the brain's healing.