New Symptom

[dldred]

Hi everyone,

My mother had a new experience the other night with her left leg. She went to bed and after a while her leg seemed to have a mind of its own. She said the only way she can explain it is her leg was having a seizure. She said it twisted on its own and would bend up on its own. It eventually stopped but she was left with pain in her knee all night. We are still waiting for more testing for her as the 2nd neuro could not come up with a diagnosis from the previous testing. The first neuro was so positive it was ALS just from her clinical symptoms. So now we are on this wonderful roller coaster ride. I was just wondering if any of you have had anything happen like that in your legs ? I know about the tremors and fasiculations and spasms, but this sounded different. This is the first time she has had any kind of spasm etc. in her legs. She was diagnosed in March of this year but has had symptoms for three years now. (foot drop and and slurred speech) Her speech is getting a little worse and she says her knees feel weak. Sometimes when she bends over she has trouble straightening up right away but if she waits a minute the strength comes back. It has not really progressed much other than that. I am grateful for everyones opinion on this as I put more trust in someone who is experiencing these things than someone who has no idea what it is like to live with this.


Thanks once again
Dana

[joelc]

Sorry about this recent problem. I don't know what it might be - I have never had anything like that so it does not sound like an ALS to me. I hope you can get some answers soon.

[BethU]

Dana ... I've had that same experience with both feet. Mostly one foot at a time, but it did happen once with both. It was extremely painful.

It usually happened in my sleep. I would wake up with my foot drawing forward and up as if my toes were trying to reach my shin. It was completely involuntary. I would use my other foot to try to press my foot back to normal, but then the affected foot would continue to curl DOWN and back as if my toes were trying to reach my heel! Once it happened with both feet at once, and I jumped out of bed and found that just standing in one spot without moving stopped it.

It also happened that my foot would curl under to the side. It happened a couple times while I was awake, when I was driving (EEK). Fortunately, in both cases I was driving slowly out of a parking lot, and I was able to pull over and park, and get out of the car and stand there till it stopped. I was really frightened to drive on the freeeway if, for instance, my right foot might start to press down on the accelerator involuntarily, so I restricted my driving.

It happened over a period of a couple months, maybe a dozen times, and then stopped. This was a year or more ago. I've never mentioned it to a neuro and don't know what caused it. I was not experiencing any symptoms in my legs at that point ... it was almost all bulbar and some weakness in my hands.