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Scrdtodth

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I posted here several months ago but that thread is closed. I just wanted to let you know I was diagnosed with Painful Legs Moving Toes which is less common than ALS supposedly. Go figure...but it is not deadly. Add to the list of diagnoses if you like.
 

swalker

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Thank you for the update.

I am very sorry to hear of the diagnosis you received. I had never heard of that syndrome. I read a bit about it on google and, while it is not terminal, it certainly seems like an unpleasant diagnosis.

Good luck as you move forward managing your syndrome.

Steve
 

ShiftKicker

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Mar 16, 2015
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06/2015
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Past posts here: https://www.alsforums.com/forum/do-i-have-als-als/43520-went-neurologist-yesterday.html

Thank you so much for returning to update. I am so sorry you've found yourself with such a diagnosis, but I am very glad it is something that is not terminal. I hope you find some relief now you have an idea of the root of your symptoms. Hopefully you can take some steps to manage what appears to be an unusual and life affecting condition.

Please take care

~F
 

KarenNWendyn

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I had never heard of that syndrome either, so I looked it up in an online medical textbook. It apparently was first described in 1994 in London.

“Painful legs and moving toes is a rare symptom complex that sometimes complicates trauma to the spinal cord or cauda equina, lumbar root lesions, or peripheral neuropathy. Patients present with neuropathic leg pain associated with persistent, semirhythmic toe movements that cannot easily be reproduced volitionally, and may be only partly suppressible.”

I hope you get relief for this. I’d imagine Gabapentin might be worth trying, or perhaps Ropinorole.

Thanks for getting back to us. I wish you the best.
 

Scrdtodth

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Thank you all. I think a spinal cord stimulator might be what I have to do possibly. Going to give everything else a try first, though. If anyone else here ends up with a similar diagnosis, please feel free to direct them to me.
 

Scrdtodth

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AL
Yes, I have started Gabapentin - it might be starting to work some. This is an ALS board, so I don’t want to drive you crazy but if I end up finding something that works, I may let you know. My doctor saw another case of this two weeks before mine!
 
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