Do you experience muscle twitching?Posted by Dagmar on October 16, 2019 at 7:31 pm
People living with ALS often experience muscle twitching or fasciculations, as the signal from the nerves to the muscles become more disrupted. These are caused by the tips of nerves (axons) coming into contact with nearby muscles, sending an electrical signal which causes the muscle to twitch.
Do you experience muscle twitching? How do you treat it?
MemberOctober 17, 2019 at 11:40 am
In the beginning the baclofin worked for making them more manageable. Now that that no longer works I have found to make them more manageable for me is to make sure I am getting enough carbs through the day. If I just eat protein I feel like I am being shook apart. So in the morning I will start off when I get up with English muffin to start with and my twitching seems to be calmer through the day. I have to manage what I eat or will feel like I am shook apart by the twitching.
MemberMay 4, 2021 at 6:26 pm
I have found that since I have started taking AAKG (arginine-alpha-ketoglutarate) powder supplement my fasciculations have decreased.
My neurologist recommends no more than 20 grams per day as an excessive amount can be detrimental.
Best of luck…..
MemberOctober 17, 2019 at 12:04 pm
That is so interesting that you found relief (albeit “some”) by adjusting your diet. Thanks for sharing your experience and solution.
MemberOctober 17, 2019 at 12:26 pm
When I started on Radicava, I noticed a decrease in fasciculations and intensity. An unexpected benefit for me.
MemberOctober 21, 2019 at 12:53 pm
I had minor muscle twitching in my lower legs during my 1st year… but it has gone away. I personally credit improving my diet, daily stretching and intentionally moving throughout the day as helping. The difference from my 1st year to now (9 yrs.) is back then I was sitting more, letting my legs stiffen up and overall feeling tense. Haven’t had twitching for a long time.
MemberOctober 22, 2019 at 9:18 am
I have found relief from muscle twitching and spasms in my legs with twice daily application of CBD/THC cream. Using 25% each in essential oils.
MemberOctober 23, 2019 at 12:53 am
I do have twitching and some really painful cramps. At the beginning it was only in my tongue but now, almost three years later, I have them in many muscles. I still am active and have very little muscle weakness. I do not take anything for the cramps but I intend to once my study is over.
MemberOctober 23, 2019 at 1:32 pm
Hi Dagmar, I know you don’t believe in the deanna protocol, but that really cut down my fasciculations. But also when I don’t eat healthy or stretch it increases the frequency and power of the twitching.
MemberOctober 24, 2019 at 11:15 am
John — I can relate with having a high startle response 🙂 (I think medically it is have high tone in reflexes)… watching movies with surprise explosions in them, I’m one-inch up off the chair!
MemberOctober 24, 2019 at 10:45 am
I’m a poster child for cramps, twitching, excess tone, and spasticity. My startle response is off the charts, sneak up on me and I’m on the floor. Mostly I just deal with it. I was on mexilitine which helped some at night but eventually my heart rhythms went crazy and I had to go off it. I have not used baclofen or tizanidin.
MemberOctober 24, 2019 at 12:37 pm
I have another perspective. Given the cascade of changes and the shock after the diagnose, twitching was the least of my worries. I kind of ignore them, they come and go. I find that the less you dwell on those kind of minor symptoms the better.
MemberOctober 24, 2019 at 12:54 pm
I agree Patricia — keep things in perspective…don’t sweat the small stuff…and always: adapt 🙂
MemberOctober 24, 2019 at 12:59 pm
I have to warn my doctors before they test my reflexes! They are extreme! I am afraid I will hurt them!
MemberNovember 3, 2019 at 11:29 am
I have a question about fasciculations. My symptoms started with left leg muscle weakness and numbness in December 2018. Right leg also had minor weakness and denervation. I ended up having minimally invasive back surgery March 2018 as all surgeons thought I had nerve compression as my MRI showed spinal stenosis. It was only after surgery did I start to see fasciculations in both legs. I thought the fsciculations were my nerves getting better. After an EMG in September I was given a presumptive diagnosis of ALS.
My question is do fasciculations typically come first and then weakness/atrophy? If so then my my surgery may have been my ALS trigger.
MemberNovember 3, 2019 at 2:38 pm
John, I don’t think there is any established order to “what comes first.” pALS can experience muscle/nerve twitching at any point.
Muscle weakness and/or atrophy is the result of lack of muscle movement. Your muscles are simply receiving incomplete signals from the brain commanding them to move. So, it is important to move every muscle, every day (range of motion, stretch, light resistance). If your brain can’t move them, use your hands. If you can’t do that — have someone help you. It may sound weird to say but: we don’t atrophy from ALS, we atrophy from lack of movement. ALS sets us up to move less.
MemberNovember 3, 2019 at 1:26 pm
I had a somewhat similar scenario, including an L4-L5 laminectomy June 6 2019, almost 2 months prior to my ALS diagnosis On July 29.
Same day as the diagnosis, I started to have fasciculations in my thighs. Coincidental, I’m sure.
Foot slap had started mildly in Sept of 2018. Some dysarthria in January of 2019. I did have pain & pins & needles in my foot at same time. So I had both issues at the concurrently (I think).
Since then, my twitching has subsided a bit, about the same time I started with Radicava.
MemberNovember 3, 2019 at 1:34 pm
Oh, and to your question, I had some notable leg weakness prior to the twtching.
MemberNovember 4, 2019 at 11:26 am
I began having fasciculations in my thighs about a year ago and did not know why. I mentioned it to my general practice doctor and she paid no attention to what I described to her. I knew this was new and different for me but because it was intermittent I did not consider this symptom very important. Fast forward to Sept 2019, I saw the neurologist at USC Keck Medical and I suspect she knew that this would be symptomatic of ALS. It was at that time she ordered comprehensive blood tests and the EMG. The results of these tests confirmed her suspicion that my symptoms were consistent with ALS
I continue to have fasciculations intermittently throughout the day. I take homeopathic nerve calm tabs and that seems to calm them.
MemberNovember 6, 2019 at 7:31 am
One more thought on fasiculations,spasticity, excess tone and hyper reflexes all of which I have lived with for going on 6 years. My Dr.s have come up with treatment ideas for all of it. Muscle relaxers, heart medication which is thought to slow voluntary nerve impulses, (and made a mess of my heart rythem), even offers to implant a baclofen pump and boots injections. My response has been no to all. These treatments are palliative and will not retard progression. However difficult coping with all this uncontrollable movement is I feel that it is contributing to the muscle at least staying alive. Meanwhile I am a believer in keep yourself moving as best you can by persuing excercise and daily activity as best you can. I’ve slowly lost a great deal but I can still walk slowly with a rollator or crutches, take care of my personal needs and dressing,prepare simple meals, drive and enjoy many activities with friends. For me the best thing has been to remain positive, work around your symptoms and don’t bother with treatment which calms muscle just to promote comfort.
MemberNovember 7, 2019 at 8:27 pm
I was diagnosed with ALS on March 20,2018. One month later I was experiencing muscle fasciulations. I immediately googled to search for sterching excercises. I stretch daily for about 15 minutes upper and lower body and also balance routine. It worked for me and I am taking 1500 mg of terumic daily which helps cut down inflammation.
MemberNovember 8, 2019 at 12:12 pm
That is an excellent remedy Rudy!
MemberNovember 8, 2019 at 10:31 am
In May 2019 my neck muscles got weak and I am wearing a brace around my neck. I have experienced sharp pain in my neck. I take a pain pill before I go to bed to sleep for five hours. I have an ALS clinic next Friday and I will ask the Doctor what to do. Have any of you experienced that? What did you do? PT?
MemberMarch 10, 2020 at 11:07 pm
Hello, I am interested in this topic of fasciculations as that is what alerted the Dr to have my husband tested for ALS. First he had them on and off mostly on his left side starting in January of 2019 (just turned 50) which he attributed to mild arthritis in his shoulder and his hip replacement he had done 2 years prior. He didn’t think much of it until July 2019 when his Dr noticed at his annual visit. The fasciculations have intensified to his whole body most of the time. Then by the end of November he was diagnosed with ALS based on an EMG test done by the head neurologist at Toronto general hospital and then again in January 2020 by Toronto Sunnybrook’s ALS clinic(Canada). Other than the fasciculations he hasn’t experienced Any weakness and it’s been a year since they started. The neurologist at the ALS clinic says he hasn’t seen a patient present with just fasciculations without weakness by a year. I am wondering if this is because we are in Ontario Canada and have a small population they are looking at?
Has anyone else experienced this? Do you think he is just in the early stages of ALS? I just don’t know what to think or what to prepare for.
Thanks for reading 🙂
MemberJune 10, 2021 at 4:39 pm
I went to Toronto General as well last week. I’ve been having all over muscle twitching for almost 2 months. He said clinical and emg were normal. He also said als doesn’t normally start with all over fasciculations. That’s not what I’ve read. He also said emg can be done to early. I’m so scared as I have 2 young daughters I need to be here for
MemberMarch 11, 2020 at 5:12 pm
for me Magnesium works.
if I stop for few days taking magnesium supplement I Immediately notice a lot of twitches and some cramps.
as soon as I resume the magnesium pills , they disappear, or get very mild.
i use cvs chewable 400mg pils. 2 each day
MemberMarch 11, 2020 at 11:13 pm
Thank you- we will try that.
MemberMarch 12, 2020 at 3:49 pm
That is interesting that your husband only has fasciculations/twitching and no other symptoms of ALS. I too have twitching from my head to feet and everywhere in between since a year ago. But also lost most of the use of my right hand and developed speech issues prior to the twitching starting. The twitching is stronger with exercise and being on my feet all day. I use Magnesium 400 mg daily and just deal with it.
Have you researched Benign Fasciculation Syndrome?
MemberMarch 12, 2020 at 4:36 pm
Most of my twitching is concentrated in my right arm and hand. Sometimes it’s calm while other times very hard to eat with a fork or spoon. Quite a bit of upper body atrophy.
So far legs are holding up.
MemberMarch 12, 2020 at 4:37 pm
I’ve had noticeable twitching for a couple years, leg cramps at night before the twitches. Vitamin B1 and B12 seemed to help, so I kept taking those, as well as about 20 other supplements recommended by several sources for neuropathy, which was what all the docs said I had since my first complaint in 2018. Twitching got worse, several docs commented on it, but it didn’t ring any bells until one of the sharper docs I saw commented that she was “concerned” that I presented as though I had MND. Once that stone was turned over, my neurologist gave me a formal ALS DX on Jan 24, and it’s all downhill from here. The twitching doesn’t really other me, other than as a reminder of what’s to come.
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