Experience Constant Activity?

Highlights Only
My calves and feet (feet drive me nuts) are in a constant state of movement. I try not to look at them but everytime I do they are moving. The in and out, worm like movements. Ugh, I wish there was a pill to stop this:)

Regards
Sean
 
I feel like my whole body is constantly buzzing and sort of tingly. This is starting to be worse than the twitching. I'm sure glad I found this site or I would definately think I was losing my mind by now....going on 2 months. Thanks all
Alli
 
My calves are always fasciculating - I mean that very literally. And I have the bag of worms look to them and my feet. Today I freaked out actually thinking it was als. Other body twitches are random and usually just one twitch or thumpers.

Is there anyone here that has calves like the worm deal and have had it for long enough to be certain that it is benign?

Mark
 
Mark,

The comforting thing that I found (and continually find) is that there are many people on this site that have had this thing for a while. Like you, I've had this for about 3 months. Are you experiencing any kind of muscle tightness in your legs?
Let's all hang in there
Mark
 
Mark,

I did at first but it has relieved a good bit. When the first attack came on three months ago I would sometimes get very stiff in the legs and could not exercise well. Sometimes I will get minor cramps in the calves and feet but they go away very quickly. As well, at first when I would move quickly I would get muscles locking up - that too improved after a month or so.

I know the benign fascics are possible but my calves just look so malignant. No weakness though. To test I did one leg calf raises with my whole body weight with no problem. Don't know if this means anything. Perhaps people with nmd can do calf raises for a time too when the disease is present. My doctors don't think I have it but I am still too new to the whole thing and it freaks me out. Hard to believe it could be benign but I have to convince myself of it.

Mark
 
Yes, my legs are currently on the go, no problem with strength though, in fact they feel stronger than ever, went down the blue john mines yesterday - 350 steps down and 350 steps up no problem.

Jay
 
MarksmanS, yes I have the bag of worm thing in my calves. I still find it frightening to look at. The soles of my feet, particularly the arches twitch constantly and move my toes. The foot twitches look like long lines. The calf twitches are a combination of long thin muscle fibre twitches, ones that look like someone is poking you from the inside and huge thumpers that grab the muscle and hold it in a twitch for a few seconds then release.

I feel the need to constantly move my legs to distract me from noticing the twitching. And I feel that my legs are never rested.

Diego4Life
 
I am sort of comforted knowing another person is experiencing the madness of the calves deal. How long have you been twitching? And did you have an EMG? Is it possible to have the bag of worms and not be sinister? I am in my fourth month of twitching now. Upper body stuff is not as bad as at the onset but calves are ridiculous.

Thanks,

Mark
 
MarksmanS, Lots of people have the bag of worms in their calves. Steve Paul does, read his posts on PNH (type PNH in the search tool). It is actually called neuromyotonia. The latest research sugests that it is an autoimmune disorder caused by antibodies forming against the potassium channels, called a channelopathy.

I have twitched in the calves for 10 years, so I hope that if it was sinister I would have known by now! I had a normal EMG 10 years ago and a normal MRI at about the same time. I am having a big flare-up in the calves which also includes cramping now! Saw a neuro in Feb 05 and he said EMG was not necessary. Twitching for more than 3 months with no weakness is not ALS. He wouldn't even entertain it. So stop worrying.

Diego4Life
 
Diego4Life,

That really helped me. My doctor told me last week to just keep living. The anxiety with this is tough though I find it enriching in a way. 10 years!! WOW!

Do you think BFS could be related to the herpes virus? My doctor told me that like one in two people have herpes and may not even know it. It lives at the base of the spine and, though I am not a doctor or even knowlegable about such issues, I would imagine it must irritate the hell out of the nerves.

So I can have the bag of worms and not have als is what you are saying. That's the piece that bothers me the most.

Thanks,

Mark
PS - Have a greate fourth of July.
 
Thanks MarksmanS.

We don't go a lot on 4th July celebrations in the UK, but thanks for the thought and I hope you enjoy the day!

If you have seen your doctor, I take it that he has checked you out and declared you OK? What did he actuall say to you and has he referred you to a neuro?

I think many things can cause BFS or BCFS, however my own belief is that those of us who fasciculate in this way do have PNH (peripheral nerve hyperexcitability) caused by an autoimmune disorder. Professor Hart, who has done the latest research into PNH believes that the antibodies are present in all who twitch like this, but it is very difficult test to perform. He checks the cebrospinal fluid for the antibodies.

The bottom line is that it is a benign condition, which I often have to remind myself of when I look at my legs and feet. It is scary. I would suggest that with no muscle weakness you are in the same boat as the rest of us. Let me know what your doc said?

Diego4Life
 
Diego4Life,

No fourth celebration in the UK? Sorry on that - I assumed too much.

I went to GP two months ago after about one month of twitching. She said, she didn't see the fasics but would refer me to a neuro anyway to be safe. Exam was fine too - she said she doubted I had als but was not sure what was causing the fasics.

Then I went to a neuro. My calves were twitching and he could see them. My neuro exam was fine and he did not want to do an emg or anything. His feeling was that viruses set off this disorder though he had no proof of that. He said I could be twitching a long time. He said no way als but that, to cover his butt, he would say I would know for sure in 2-3 months in case he missed something.

Subsequently, I went to have gone to a shrink and back to the GP several times. They did a bunch of bloodwork all normal along with mris of brain, c-spine and lumbar - all okay. My most recent neurological exam was also fine. Twitching has sort of settled in calves and feet though I get sporadic twitches everywhere. If I get very nervous my tongue and throat will twitch.

I don't have weakness. Yesterday I did a full body training program with no issues of balance, weakness, etc. I am still nervous about als because I wonder if it can just take a long time to show symptoms. I asked my GP about Lyme and Lupus but he said I had no other symptoms of these illnesses so he would do it if I wanted but he would not personally. He also said an emg would not be warranted because I have no weakness or neurological issues which would be indicative of a problem. I just feel like the neuro handed me a bomb with that 2-3 months. I added another month in my mind for margin of error :) ....

Thanks again,
Mark
 

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