Acute Disseminated Encephalomyelitis (ADEM) Support Group

My "ADEM" story


#1

Hi All,

I am Dutch so if I sometimes use the wrong words...please forgive me.. ;-) A year ago I went home from work with the flue. After a few days with high fever it looked that the flue was gone. In the upcoming days I went several times to the GP, my skin was feeling strange and I cold not resist any cold. I also got very much diarrhea and noticed that I could almost not urinate anymore. On a Sunday I went with my wife to the GP because I cold not urinate any more. She gave me an catheter and I was happy, because I lost 2 liters of urine. She told me I had to go to the ER because she thought I was really very sick. I went to the ER, they checked my blood, urine, kidneys etc and cold not find anything, i was just a bad flue. In the next days I started to shiver and had very much pain in my hand and feet, the felt very cold. After a few days the catheter was taken out and I had to try to urinate. Did not work, no feeling at all. I had to come back to the Urologist after 13 days. Again nothing happened. But in the meanwhile I could not walk anymore. The urologist told me to go back to my GP.

Next day I went to the GP, he did some test and called the Neurologist to ask me if there was room in the hospital because he want to sent me there. I went to the hospital (first ER again) did some small test and go a bed in the hospital. Next 2 days (Saturday Sunday) I got MRI's. Next days blood samples and lumbar punctures, eye tests etc. After 1,5 weeks of research the diagnose was ADEM. They asked several hospitals for a second opinion and they came with the same conclusion. After this a got 3 days of IV with prednison (1000mg per time). After 3 weeks hospital I started with my rehab.

I am almost 1 year further and can walk now with canes and still need to use a catheter. My hands are still feeling like they are sleeping and my skin still sensitive. I still make small progress at the rehab but notice that my body is reacting on the weather (do others have this to?) So went it is cold and wet my muscle are more stiff. I am using a bit of baclofen (3x10mg a day). My assurance asked for a second opinion in the USA (vanderbilt clinic) The outcome was a surprise for me. The area affect by ADEM in my spinal cord is quite large so they expect a long recover period (multiple years) but the fact that I can do some walking at home without canes is positive and they expect full recovery (very optimistic for US doctors...)

Oh, I am 42 of age....Hope to hear your experience on recovery and treatment..

Have some nice holidays..


#2

Thanks so much for sharing. Writing this will help a lot of others.