Acute Disseminated Encephalomyelitis (ADEM) Support Group

How long is the recovery time?

Hey,

I am Arjen from the Netherlands. I got sick during my trip in aussie. I suffered from a herpes simplex and received medication for it. this was on April 1, 2017. after about 2 week I started to walk bad. did not feel well and had problems with peeing.

i went to the hospital and they check me and send me back to the hostel with a catheter. had it for 3 days and they putt it out. but 1 week later i was steel feeling very sick and everything deteriorated. on April 23 I had to go to the hospital again because urinating was no longer possible. walkin was very hard and i had zero energie.

2 days later i was complety paralyzed. i could only turn my head. I have been treated with steroids and 11 x plasma exchange.

i spent 8 weeks in hospital. then they flow me back to the netherlands. Spent 2 weeks more in hospital and then to rehab 4 months.

5 months later I was able to walk a short distance (20m) with a walker.
now 2 year later i am able to walk max 1500 m with a cane.
i am still improving but very slow.

I wonder how long u are recovering and do u still feel improvment after long time ?

Greetz

Arjen

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Hi Arjen,
My name is Lynn and I was diagnosed in May 2013. ADEM’s symptoms are different for each person. It depends on where in the body ADEM initially hits. Recovery is slow. I consider myself lucky that I didn’t get it as bad as some people. I lost all use of my hands (that was the worse of it) where I had to learn to use them all over again. We are all left with some type of disability. I know telling you to have patience is difficulty to hear, but it is necessary. Take it one day at a time. Are you better today than when you were in the hospital? Are you better than 6 months ago? Are you better than last week? Stress does not help! We are here for you if you have questions or just want to vent. Everyone is ready to share their experiences. Hopefully, it will give you some comfort. Keep us up to date also. Take care of yourself. Keep in mind, ADEM is considered a rare disease and there are not a lot of doctors that are familiar with it or us. Lynn

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He Lynn,

Thanks for the quick response. Do u still improving over months ?
I have always remained positive and calm (ofcourse some bad days, but more positief ones), but it would be nice to hear others about their rehabilitation and improvements.

my bladder also doesn’t fully cooperate. Are there people whit the same problems? and do u feel improve after a longer period of time ?

greetz

Arjen

Arjen,
People can keep improving…just don’t give up. It seems the worse a person is, the longer the healing. Like I said, we all seem to be left with some type of disability. In addition to my hands, which have pins and needles in them from my wrist to finger tips, 24 hours a day, my personality is somewhat different. For example, I used to think in grey colors; now my thinking is black and white. Where I could really multi-task, now that’s difficult. I prefer finishing whatever I am doing before I handle something else. My husband says I’m different, but it’s nothing he can’t accept. All in all, I’m still me. I do frustrate more more easily than I used to and I’m somewhat more emotional. BUT compared to when I was diagnosed…I’m doing great! Try and stay healthy…vitamins, exercise and try to control your stress…worked for me. Take care, Lynn

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Lynn,everything you said was right on. I got ADEM 2015, LEGS still numbness, can’t multitask either. I had major surgery WHIPPLE for pancreas cancer but turned out to be my bile duct had a cyst. I had issue with peeping while in the hospital with ADEM, they sent me home with catheter but didn’t use, but still have issues. We all are unique and special. I’ve learned to take each day and breathe, so my blessings❤

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Stay strong Lynn had good advise. Take care❤

My daughter became ill sep 2017 a few day before her 30th birthday here we are nearly 2yrs later and she is partially paralyzed with a treacha and feeding tube progress is slow Drs seem to treat symptoms not the disease she has 3 little girls that I am raising she is receiving physical therapy at home insurance won’t cover in paitient therapy which has been recommended by her PT are there any organization that will help cover cost for in paitient therapy out there please help !!!