Spasticity after ADEM

General
1

Hi everyone -

I'm 26 and I was diagnosed with ADEM last December, so its been a little over 4 months now. I was at an inpatient rehab hospital for 5 weeks and so far have done well with the exception of spasticity iI developed when I gained motor function back in my legs. Its pretty ridged and and I cant walk very fast, I use a cane most of the time. No doctors that I've encountered have heard of ADEM before me, so its been a frustrating process to never know how i'm going to recover. I wanted to reach out and see if anyone was/is in a similar situation. Am I doomed to have spasticity forever now? It seems pretty far out and I don't have any weakness or any other issues. Any insight would help...Thanks!

2

Hi there, and welcome to the group - sorry for the reason though.

I know you are concerned about the future, and I know first-hand how scary this is, but believe you can get better and pursue every avenue you can find. Personally I've done vitamin regimens (Vitamin E and Biotin are good for the brain I've heard), homeopathy (if you can find a good homeopath - mine is in Virginia), and now I'm doing acupuncture for nerve pain.

The first doctor I had sent me back to work after 3 months telling me I was all better - I thought I'd gone crazy! I wasn't better, but he knows, right? WRONG! I struggled to survive a few hours each day at work and it was truly awful! Finally I found a doctor that had at least heard of ADEM. She allayed my fears. Here's what she said to me that really helped:

"If you broke your leg, we'd put it in a cast and keep you from using it while your brain sent information to your leg to heal. Then we'd slowly do therapy to strengthen it before using it at full. You (I) broke your brain! So it's sending information to heal while still having to work at full! It's going to take time."

I don't know if that helps, but it helped me. I'm at 3 1/4 years now and still improving ever so slightly. In the first 6 months, I made great strides, but now it's tapered off. It's really hard to be patient (for me, anyway), and the Social Security disability slowness has made it even worse. But I am encouraged, and I hope you can try to let your body heal.

I posted about a podcast coming up next week from the Transverse Myelitis Association on ADEM. It might be worth your while. Also the TMA has resources for doctors that are familiar with ADEM - but there aren't many.

If I may ask (as I'm compiling data to give to researchers about adult-onset ADEM), what brought yours on? An infection or a shot?

Hang in there - I think it will get better. Also there's a TED Talk called "My Stroke of Insight" that might be encouraging. It's be a neuro-researcher who had a massive blood clot in her brain and had to relearn everything INCLUDING THE ALPHABET! And she got full functioning back. She also wrote a book about her experience.

Hope this helps a little. If you want to "chat" more, you can email me at ■■■■■■■■■■■■■■■

LauraK

3

Hi, my son aged 31 was diagnosed with ADEM April 2015. He currently still has lesions on the left side of his brain according to a recent MRI. He only just started reading recently and doing some simple maths. Remembering is slowly improving. Long term memory is better than short term memory. The neurologist predicts he will only be fully recovered in about a year. So we are looking at around 2 years or maybe more for recovery since the ADEM attack. The lesions on the brain first has to heal then then only will the myelin regrow. Every case is different but the brain takes a longer time to recover compared to other organs in the body. I recall him complaining numerous times( pre ADEM diagnosis) about spasticity but the other neurologist told him he just needed to exercise. No MRI was done so we do not know if it was related to ADEM or something else. Ten months after the initial ADEM diagnosis he stopped complaining about it and when we ask if he is in pain he says no. He really is physically fit and walks about 20 000 steps a day. My son's neurologist also agreed that we should try high doses of the biotin supplements as research indicates that biotin helps in repairing the myelin. I want to thank and acknowledge LauraK for initially introducing the idea of Biotin to us. I sincerely wish you well and hope you recover. This is one of the hardest challenges I've had to face as a mother. There is recovery but it just takes a long time according to our neurologist Take care all the best to you.

4

Hi, what dosage of Biotin does your son take? Is it helping him? Have you seen improvements? Thanks, Jenny

5

Hi Jenny he is taking 10, 000 mcg. Our neurologist recommended that he takes the highest possible dose. We use the solgar brand. His recovery is very slow but we do see improvements on a monthly basis. He is able to read any word he sees but still struggles with reading complete sentences. He had a very severe case and I suspect he had ADEM long before it became really noticeable to us because he lived on his own. There were some erratic behaviors we could not explain and constant nerve pain that he complained about a year long prior to the severe attack. The last MRI we did in March still showed visible lesions and the neurologist said that the myelin will only grow once the lesions have healed. We will be doing an MRI in August. I will update you on any changes in the MRI. Hope this helps.

6

Not on any meds at mo for ADEM, but still in 2 year recovery period. From day 1, have had muscle spasms; originally in my stomach every time I twisted, which felt like electric shocks. Legs still spasms now and my toes curl up, they also spasm during the night, meaning the wife has spent quite a few nights in the spare bed!!