Hi! In the eight years I've had this, there have been a few times that it has occurred in my my hand. It never last very long, it happened again over the weekend. It has only ever lasted a couple of days in my hand. Odd that you mention it now, ha!
For me, before all the twitching started in my left foot, I had a strange sensation in my RIGHT foot. My second toe felt like it was wrapped in a band aid, and it was like I couldn't stand the feeling of my toes touching each other. I would stare at my foot and think they aren't touching, but sure feel like it. That sensation has since disappeared.
My twitching occurs mostly in my left foot. My big toe never seems to move. The last three toes are constantly going. They move side to side and in a somewhat circular motion at times. I can make a concentrated effort to stop the movement, but it starts back on it's own. Also, they have been known to contort into a weird unnatural state. My second toe sort of drops lower than the rest and the next three curl up (again the big toe is unaffected) this occasionally results in a cramp.
The right foot gets occasional twitches and even less so on the left hand. I can't say I can recall anything happening in the right hand. Also, I notice a fatigue in the left arm. It's kind of the same as what I experience in my left ankle and thigh. No pain, just fatigue.
I suppose that sometimes my feet feel like I've been standing on them for hours, but I have never really connected that with PLMT, maybe it is?
I did find some crazy toe separator device at CVS that is designed for sore feet. It really seemed to help with the fatigue.
Sorry to ramble on so much, but I just wondered if anybody here will say, "Yeah me too!!! " when they hear about some of my ANNOYING symptoms?View Thread
Yippy skippy!!! This has to be one of the most annoying things on the planet. Nobody knows what it is!
I have had the painless form (PoLMT) for 8 years now. It's crazy. One day I woke up and my toes were wiggly jiggly all by themselves. I initially tried some different drugs to control it, but the side effects were terrible. So now I just go with it. Good to hear about the acupuncture, because I was considering that.
Most days it is just annoying and I ignore it. Sometimes it causes fatigue in my ankle and a slight pulling sensation into my upper thigh. When it gets to that fatigued point I sometimes get a real bout with anxiety, which only makes it worse.
For the most part I have leaned to live with it. Over the past 9 months I get an occasional stabbing pain in the arch of my foot behind my big toe. I don't know if that's a part of this syndrome, or if it's unrelated.
It would be wonderful to wake up one day and have it mysteriously vanish, just the same way it appeared.
I found the link to here on the BFS site. Thanks!View Thread
There is no secret! I think I am just used to the odd sensation. However, when it goes into overdrive, I still get pretty freaked out.
My neurologist had never seen anything like it. I ran the gamut of possibilities, many of which were degenerative fatal diseases (Huntington's, MS, ALS). Needless to say the whole thing freaked me out. I found the BFS site and discussed it with my dr. He also must have been doing some digging, because he found the PLMT diagnoses, but wasn't sure because I had no pain. (Wondered if BFS and PLMT/PoLMT were related?)
After eight years and no real change as far as progression, I do feel more reassured that I am not suffering a serious fatal illness. Unfortunately, it is rare and there is next to nothing regarding it on the internet (besides some mentions in medical journals) so I could never really get an understanding of what others with it are going through.
Thankfully, I suddenly don't feel quite so special anymore. View Thread
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