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Not alone
twitchytoes posted:
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!
kmaze001 responded:
Good Lord. Eight years! I'd love to know your secret of ignoring this annoying condition! I find it horribly distracting much of the time.

I'm glad you found this community! I was afraid they'd take it down because there are so few of us here. I wish there were a way to get the word out. It's such a relief to be able to "talk" to people who know what this is like. I'm glad the BFS post led you here. I started out on BFS, and I do suspect other BFSers may in fact have PLMT.
shelbylaynesmom replied to kmaze001's response:
I have this also.Almost two years,,i can't amagine having it 8 years.The way the dr's talk not many people have this.But, i believe different.
kmaze001 replied to shelbylaynesmom's response:
It's pretty rare. I can't find any statistics on it, though. My neurologist is a movement disorder specialist affiliated with Rutgers University and the University of Medicine and Dentistry of NJ. He says he sees about one or two cases a year.
twitchytoes replied to kmaze001's response:
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.

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