Thank you for doing this. Until I got ADEM, I had never heard of it. I was a Pediatric R/N. !
1) Sue F
2) 2009 57 years okd
3) Unknown cause. Previously very healthy. Started with weakness in rt foot and leg, felt weird ! Went to ER. CAT scan revealed ? tumor. All within 24 hrs..
4 No. My legs, balance, proprioception impaired,.weak
5) I had brain surgery for a tumor, which turned out to be lesions, Spent 3 days in ICU, then hospital for recovery 10 days.Spinal tap, MRIs found more lesions in my spinal cord. Started on IVIG and large doses of Prednisolone. Then Rehab for 6 weeks, PT twice a day. Had to learn to walk, sit (not slump!). Very weak. Thankfully upper body only slightly affected. Wheelchair bound. 3 months, total, in hospital. Went home, PT 3 x week. Eventually, could walk with a walker and sometimes with just a cane.
Now 6 years later, still use walker, legs still weak, but able to get around. Can drive with hand controls, thank goodness ! Mentally, still good. I'm able to do volunteer work, from home, which I love..
I have an implanted Baclofen pump, for leg spasticity. Take Lyrica for nerve pain, dose increased over time. Have neurogenic bladder and bowel. Need laxatives and Vesicare. Get frequent UTIs. Go to PT once a week, for muscle improvement and balance, also psychological encouragement. Get depressed when I don't feel well and tasks become a burden, otherwise I'm thankful I am not wheelchair bound, and hope that never happens !
I agree that we need some research into this condition. I was repeatedly asked if I had recently traveled outside the USA, when I was first ill. Answer was no, but I was doing patient care at a hospital in California, where there were lots of migrant workers. We worked with some really sick kids, with serious infections, in ICU. All my labs results for viruses etc came back negative.
This was a devastating occurrence for a fit, healthy person and I always thought I would recover completely. How wrong I was !