My husband's story started only one month ago. He didnt feel "right" and thought he was having a stroke. We went to the ER and he was admitted. After an MRI he was diagnosed with MS. He was acting pretty psychotic and repeating hundreds of times he wanted to go home. At that point he was still walking a little. Three days after that and another MRI and steroids, the neuro said he was not responding and it might be ADEM. I am grateful they were quick about it. He was transferred to a bigger hospital and given IVIG. He lost use of left cortex: seeing, walking, feeling. So that was about two weeks ago. A week ago he was transferred to Acute Rehab (We are at Mercy General in Sacramento). He is getting intensive rehab. He is much calmer. He is now on paxil, plus occasional seroquel, plus his high blood pressure med. Yesterday he used a walker for the first time --- it has been a while. Things are progressing more quickly than I had imagined. Intellectually he is still there but has lost all math/short term memory. Does not know the months/seasons but does know all of us and our history etc. Cannot tell time. He will be home in 2 weeks. I am hoping he can walk somewhat. I am always curious about adult cases of ADEM. He did not have the flu but felt very weird for about 10 days before onset and was sleeping lots and lots. Thanks, Jessica
Hi Jessica. My husband is now 66. He started developing similar symptoms in Nov. 2012. His progressed subtly at first then took off dramatically in Jan. 2013. Between Nov. and Jan. I kept noticing some strange gait, mostly a drag of left foot, fatigue, squinting one eye shut. He was feeling stuff, but didn't say anything. He thought maybe he was having vertigo and that it would pass. It took awhile to get him on any treatment because the doctor didn't want to do anything until he had a diagnosis. I think the delay cost him as he has not recovered as much as we were originally told. I hope your husband continues to progress well, just be patient though. Things need time to heal.
Hi Jessica - Thank you for posting a Discussion. It's great to hear that your husband is progressing quickly and I hope that continues. My son responded so well to rehab and I'm happy you are able to do rehab as well. Please keep us posted on his progress and let us know how we can support you. Ken
Hello Jessica,
I am a 53 year old man who has a similar story. My ADEM was caused by the medication Enbrel. It took awhile to get a clear diagnosis . Just like your husband they were telling me it is MS. I was fortunate to get Dr. Nancy Sicotte as my Neurologist. She had published a paper on TNF inhibitors like Enbril and the damage they can do. Up until I found Dr. Sicotte, they would insist I had MS even after getting a spinal tap. It takes some time to get back. My IQ before the ADEM was around 140. following the ADEM it was 90 then 94 the second year after then 96. I was depressed for a while as tasks that use to be simple were now hard. I use to teach Economics 25 years ago and much of it initially didn't make sense to me. I hope this helps and please don't let them pin an MS diagnosis on your husband unless you get several similar conclussion s from other MD's
Hope you the best
Barry C
Barry - I'm curious if your IQ bounced back further with time. Not that IQ is everything but I'm interested to know how your mind has continued to improve. With my son we see he is doing "great" but without a quantitative baseline it's hard to know what that really means. Ken
I think in some areas I am doing well. In area's like spacial awareness I have been challenged since the ADEM. I use to love driving almost anywhere, now I don't. I plan my route well and stay on it. My memory got hit the worst. Some smart people keep telling me if I can find a thread of a memory it will restore that memory plus other related ones as well. I was a grown man of 49/50 when this happened. How old is your son? I do a lot of cognitive challenging test to help improve anything that I can. Do you know what caused the ADEM in your son? Also how old was your son when the ADEM hit? Does he play games like Lumosity?
Barry C
Hi Jessica. I was 47 when it started. My hands went numb after a severe flu. Then came the mri with all the spots on my brain and a spinal tab with 30 white cells. The neuro was fast to diagnose MS and administer 5 iv s of solumendrol.
Two months later I was admitted in hospital for further check ups. The second spinal tab I had was much better than the initial one (only 3 white cells) so the new docs diagnosed ADEM. Further MRIs were clear but 6 months later came another relapse that caused a lot of damage, followed by epileptic seizures. So there came again the MS scenario… Problems caused: Cognitive issues such as short memory loss, problems with arithmetics and language, problems expressing myself, mobility problems, fatigue. Thank God the optical nerve was not affected. Now, close to 3 years later I made an 85% recovery. Brain is back to normal but I still have some issues with my hands and legs/feet and dizziness though no balance problems. I am in a constant fight with my wife to sell my BMW motorcycle but I ride it to and from work every day as it is a part of me…
The last 3 mri s were clean but I am still on alert. Neuro put me on immunosuppressants. After my system rejected interferon I was put on Tysabri, a treatment for MS.
I believe the psychological effect is playing a vital role. Up till recently I was desk bound refusing to go anywhere on foot. Last week during a short visit to Spain my wife forced me to be on the streets from 10 am until 22 hrs. I wasn’t very happy but I did not die either! This was a turning point that showed that things aren’t that bad after all…
My son was 3.5 years old when he had ADEM. He got is after having something the hospital diagnosed as "Fever of Unknown Origin" which basically translates into "he had a fever for a long time and we don't know why." He was better for a few days then started getting really really tired, could not communicate, and was having trouble walking. Like so many others here he was initially diagnosed with meningitis before they did an MRI to find ADEM. He does not play any games, but he's in school so he's definitely pushing himself there. I'll give Lumosity a look to see what they have for 6 year olds. Best, Ken
bchap said:
I think in some areas I am doing well. In area's like spacial awareness I have been challenged since the ADEM. I use to love driving almost anywhere, now I don't. I plan my route well and stay on it. My memory got hit the worst. Some smart people keep telling me if I can find a thread of a memory it will restore that memory plus other related ones as well. I was a grown man of 49/50 when this happened. How old is your son? I do a lot of cognitive challenging test to help improve anything that I can. Do you know what caused the ADEM in your son? Also how old was your son when the ADEM hit? Does he play games like Lumosity?
Barry C
I wish you both well !!!!!
Barry C
I just want to thank everyone for the posts. Glenn comes home from Acute Rehab on 15 April. It will have been 30 days in the hospital/rehab. This whole thing has been unbelievable. He cannot tell time yet or understand the calendar or arithmetic. But he is still himself. But he has learned to walk, which is huge. Thank you. I will continue to post updates, esp for families with an older person getting ADEM.