Demyelinating disease

Posted by casey1329 @casey1329, Jul 13, 2022

My husband has been diagnosed with demyelinating disease,not sure which one. It came on suddenly without any warning. He had a dull ache in in legs for a few days. Then one morning when he went to get out of bed his legs gave out and he fell. has fallen a few times since then. He calls it "Jello Legs". Has anyone had a similar experience.

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Hi @casey1329, I can sure empathize with what your husband is going through. I had a similar event a few years ago when I had inflammation on my spinal cord due to a side effect from a medical procedure.
Not the same situation as your husband’s but the feeling is the same. It’s very frighting to lose that stability and to also not know what’s happening!
Does your husband also have any tingling or numbness in his legs, toes, ankles?

I read in a previous reply that your husband has been seen by a neurologist to get a diagnosis. There are many conditions which can cause demyelination of the protective covering of our spinal cord. But sometimes it takes some sleuthing to find the exact cause.

Below is some information from the Mayo Clinic site:
Obviously this is something that needs to be reacted to quickly in terms of treatment. Sometimes it can be reversed, as it was in my case. Though often these are progressive diseases but if dealt with quickly, they can be slowed.

What tests has he had done to help determine his exact diagnosis?


Thanks for the fast reply. He does not have any tingling or numbness. Just very weak, used to e able to walk 5 miles a day back in February. Now he can hardly do 20 paces outside, inside is a little better. The neurologist did a nerve conduction tests. One where she put a needle in several places and the other test involved shocking him on several places on his arm. The result was poor nerve conduction, leading to a demyelinating diagnosis. he has also had several blood tests and an MRI is scheduled for his neck & abdomen next week.
Hope that you you are now well.

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