Acute Disseminated Encephalomyelitis (ADEM) Support Group

Pain and restless legs

Hi,
I was diagnosed with ADEM in March of this year. I was temporarily paralyzed but eventually started to walk again. I can’t walk fast or run but I can walk now without assistance.
I have experienced quick jolts of pain in my legs throughout the day (the past 3 days). I hadn’t had this feeling before also, it seems that the restless leg feeling is getting worse. Has anyone else experienced this?

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I would encourage you to reach out to your doctor’s office. I do know that sometimes when nerves are recovering people can have jolts like you’re describing.

Sharon

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I was diagnosed with ADEM beginning January. I was also paralyzed. I have dealt with restless legs and spasms as well. I can tell you it gets better over time. I find that it is worse the more active I am I take baclofen 10mg at night which helps.

It has been 2 1/2 years since my complete paralysis from the neck down. I can walk really well but stairs are very hard for me. I have to wear running shoes almost all the time for support. I still have daily pain and a lot of leg spasms at night. I have to take Gabapentin (2-3 pills) every morning and night or it’s much worse. I have Klonipin for bad nights when my legs spasm a lot. CBD cream helps quite a bit with the pain. This has not changed at all in over 2 years.

hey, i was diagnosed early april 2017. i was completely paralyzed. I certainly couldn’t walk for 7 months. now 2.5 years later I can walk about 1 km with a cane and then I have to rest for a while.

my legs are pretty stiff so I take 3x 10 mg baclofen every day. cbd oil help with me. it takes away some pain/spasme and I notice that it gives me a little more energy!

I am still improving over Months with little steps.
They say that pain in the legs is sign of recovering of the nerves

Keep your head up. :sunglasses:

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My husband was also paralyzed from the chest down. He was first diagnosed April 2013. He consistently has these issues with the legs. Muscle spasms and cramps. He also experiences tremors in his hands. There are more issues he has in addition to this. Some of his body doesn’t work. As he has had 85 lesions on his spinal cord. I’m not sure if the leg cramps will ever get any better. I have been reading on .gov and .org sites about calcium and magnesium. You need the calcium to break down the magnesium for your body to absorb it. I read that it helps heal the sheathing around the spinal cord myelin. It also helps relax muscles and heal connective tissues. Amongst other things. I just bought my husband 600mg calcium and 400mg of magnesium. Two separate pills. The pills you can get together in the same pill, doesn’t offer nearly as much magnesium. Since ADEM he has developed Rheumatoid Arthritis. I also got him fish oil with all the omegas. They are currently on same at Costco this month. I’m still learning and researching a whole lot. I love the fact I found this support group. It explains a lot that we don’t know. Like our own little study. If you have any other questions I’ll be happy to talk with you and give you support. I’m not sure if you can send messages thru this site but I think of you Type the @ sign and anyone’s user name it will notify them by email. I’ve also been reading on .org and .gov sites about the healing properties in black seed oil. You just need to do your homework on the products out there. I always add .gov in my searches so I can get good info. My favorite site is NIH.gov

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5 posts were merged into an existing topic: Parents with kids who had ADEM