Was wondering how frequent each you have been experiencing fasciculations (muscle twitching)? Daily, monthly, or less frequent? How quickly does fasciculation advance in KD?

Most recently I've been experiencing facial twitching especially around my cheeks and eyelids...strange?

Fisher, I experience it daily, usually several times a day. I used to get it around my eyes too. Now it is mostly in my neck a few times a day. And at bed time I have it in my arms and legs.

My neck twitches make me look like I am nodding to people and can be embarrassing. But, my arm and leg twitches range from a gentle ripple that I can feel and my wife can see, if she is watching for them; to almost a spasm that causes my arms and legs to jerk uncontrollably. The severity depends on how hard I pushed myself that day.

I compare my bedtime twitches to the old, junker cars I owned when younger. You know the ones that when you turn the key off, they sputter and shake for several seconds?

My spouse has them constantly and worse at night. I can see his muscles twitch all the time and wonder how it doesn't drive him crazy?

Thanks for responding Jim and Lois. Your experiences sound very much like mine. Good comparison to an old junker car

Bed time is by far the worst for me. The spasms and twitches were so bad up to a couple of years ago it would jerk me awake; also the slightest noise would also wake me up. Currently the spasms are still on-going but things are 'duller' (if that makes sense). Twitching has had no change over that time. Your right about the severity correlating to if I over did it for the day.

The only thing that seems to provide some sense of control (comfort) is to meditate for 30-40 minutes before bed. Been meditating for about 20 years...much more so since finding out that I have KD.

I find sitting with KD in meditation helps to face the fear factor by learning to let go one breath at a time.

Fisher, this is a good topic. Thanks for bringing it up. In my experience, the tremors increased with the progression of KD. And, yes, if I overdo it they are much more pronounced. I also find that stress works negatively on the tremors.

I am pleased to hear that someone else is meditating and finding it helpful. If you have an opportunity, visit my Living with KD blog. There are a variety of articles on many different subjects.

Posters above mentioned that overdoing exercise is bad, but I have found that light to moderate exercise helps with the twitches.

Some researchers believe the muscles twitch because they are not getting any chemical "messages" (neurotransmitters) from their associated motor neurons. (Besides SBMA, fasciculations are also a symptom of organophosphate poisoning, which is a type of poison that blocks neurotransmitters.) So light exercise helps by stimulating the muscle and giving it a dose of neurotransmitter, which it doesn't get when you have SBMA.

Some things I have found that make twitches worse are:
- complete lack of exercise; and
- eating foods high in sodium (salt).

Some things that reduce the cramps and twitches for me are:
- light to moderate exercise;
- light exercise aimed at the specific body part. For example, if you are bothered by twitches of the face, search Google for "facial exercises stroke" and you'll find exercises designed for stroke patients, but they're good for your facial muscles too;
- eating foods low in sodium; and
- eating foods high in choline, which boosts your neurotransmitter levels. Check the thread on "Foods High in Choline" under the "Food and Nutrition" forum.

Bob take tiazadine and gabepentin which help him get through the muscle cramps. His cramps get so bad, he screams in pain. I think he does too much but that is his personality. I'm going to google, organophosphate poisoning, as he often wonders of he is doing more harm than good to himself.

At times I seem to think that exercise might speed up my KD progress. The recovery time is just to difficult to deal with. Before KD it was exercise 4-5 days a week alternating between aerobic and strength training. Use to run 25-30 miles in a week, ran a few marathons. I was quite active in so many ways it was hard to deal with letting go of my previous lifestyle. But I made my peace with it...meditation is central to that process each day. There is a new normal it has its on pace and lessons. Bruce I check your blog at least once every two weeks since discovering it. You are a source of encouragement like so many on this forum.

Fisher, thanks for reading my blog and your kind comments. Since you are a reader, you know my philosophy on exercise ... "just do it!" Find a program that is appropriate for your current capabilities and keep it up. The key is to exercise smartly, however. If you have pain or fatigue during or afterward, you need to re-evaluate your program to make certain your are stimulating the motor neurons and muscles, but not doing harm.

I enjoy my daily exercise program and three times a week long program (60-80 minutes).

i have twitche quite often, Hower after i inject lenprelin, it become quielt, I do not know why, so my wife say lenprelin make me quielt. right now stem cell can improve ALS why so slow to dealing with KD, we should strongly ask for the treatment by stem cell to government