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Do you experience muscle twitching?
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Thanks so much Stephen for the list. This is brilliant. ??
I’m currently experimenting with a range of different supplements too. I’m trying to manage my energy, twitching and cramps. My dietitian recommended increasing my water intake for the cramps and this has helped immensely.
Dagmar,
I do understand where you’re coming from but sometimes we pALS just need some hope, whatever that looks like. ??❤️
I know personally if I don’t take my vitamins that I feel tired and lethargic quicker. I eat well and exercise but it’s just not enough.
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I agree with you Danielle – – that there are supplements (and medications) to help alleviate muscle cramping and twitching – – which is the topic of this discussion string.
However, Stephen’s list is a compilation from Dr. Bedlack’s presentation about ALS reversals… patients who took these supplements not for muscle twitching, but in hopes to “cure” their ALS. To date, no supplement or combination has been shown to cure (or reverse/stop) ALS.
You’re also right, that unfortunately all we pALS have is hope. But we should balance that hope (or desperation) with calm, rational, logical thinking about what we’re reading and being told “worked for a friend.”
This hasn’t changed in the 10 years I’ve been living with ALS. A while back I wrote a tongue-in-cheek blog post about ALS “cures” titled – – Auntie A. Ellis Gets Cured. I hope you and our forum members find it helpful 🙂 and a balance to this discussion. 🙂
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It’s my bad Dagmar because I asked for the list.
I sincerely wasn’t trying to railroad the discussion about muscle twitching. I’m just super interested in all the supplements our fellow pALS take.
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Hi Dogmar. Sorry that I am probably writing in the wrong space.
I don’t want to receive any more messages about muscle twitching. I would like to visit some other topic like learning about nutrition for those people who have difficulties swallowing.
Thanks,
Patrícia Riascos
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I’ve been diagnosed with probable PLS. I’ve been having symptoms for months (likely years), but most notably since about March. It was mostly weakness and left foot drop that I was experiencing at first, but just in the last couple of weeks I’ve started to get localized twitching, in my buttocks and my left upper arm. Those are the only places. Early on I do remember a few nights of what felt like restless leg syndrome. And then I had a night where I can only describe it as an electrical storm in my left ankle. The next day I could no longer voluntarily move it. (I.e. I can no longer walk on my heel on my left foot.) I seem to get a little electricity (or maybe they were twitches and I just didn’t know how to describe them) before that body part stops working. I will say, it does make me nervous that I have UMND ALS or just straight ALS. I haven’t had an EMG yet because I’m waiting to do that with my second opinion at an academic hospital. That appointment is in a couple of weeks. My first neurologist didn’t want to do it because in his words, “They’ll want to do it again at the academic hospital and it will only exclude ALS, so I don’t want to put you through it twice.” Now I wish he had just because it has been a nightmare trying to get an appointment! It’s been months. Ugh. Sorry…totally got off topic ?
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I have constant muscle twitching in many of my muscles, especially my triceps, thighs, calves, and chest. I sometimes have them in my hands and occasionally on the left, lower part of my face. For the most part they don’t bother me, except the ones on my face.
I also have cramps, especially in my feet, legs, and hands, which can be painful. The hand cramps bother me the most because my fingers just freeze up, and I can’t use my hand for a bit. Usually this goes away in a few seconds. I haven’t dropped anything breakable yet.
I have tried mexiletine (and was part of the clinical trial for that) but it makes me dizzy and I stopped taking it.
My twitching was one of the first things my neurologist noticed when he first examined me before I was diagnosed. I had noticed them but had not paid any attention. I don’t know how long they had been going on.
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Great info here from everyone. I have been to 2 neurologist over the past year. I have had a plethora of symptoms (twitching all over constantly, especially at night when im trying to sleep; muscle cramping and pain in my calfs, triceps, quads; some weird lip sensation that I can’t explain; pain in my feet and hands; fatigue; hand spasms; and some weird all over sensation that feels like a tidal wave of electricity that comes and goes) yet I have not been diagnosed. I had an emg last year that was supposedly negative. Im just at a loss on all of this its very stressful and depressing to think about it. For the most part im a healthy active individual and the past year has been very hard. I thank you all for the insight and for all the positive info and suggestions you all share. Im praying for the best but my gut tells me different. Too many symptoms and no other explanation from any doctors. Thanks for letting me vent!! Stay as well as possible and enjoy life!!
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Dagmar, most of my muscle twitching occurs when I’m in bed and lying ng flat on my back. If the twitching continues I roll on my side and it seems to stop. Is this problem a positional issue with the alignment of my spine?
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Trevor, I think most of us who experience twitching notice it more when we’re not moving or, at rest. It just seems to come and go for some pALS.
You asked if it was due to the position you are in or coming from spinal alignment… kind of neither, I would say. The current thinking is that:
Muscle weakness and/or atrophy is the result of a 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.
There is a lot of good information from members at the top of this post/topic. I suggest you read through them. Also, when you feel twitching, adjust your body position to help it stop. No need to aggravate the nerve-muscle connections more than necessary.
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I understood fasciculations (twitches) to happen because a signal to move came from your brain but the signal to stop moving did not get there. Maybe there are two circuits involve, the on and off switch so to speak, and one is malfunctioning so you get the fasciculation. If I sit quietly and meditate I can feel them all over, day and night. They can be so small sometimes, or huge at other times.
They are always there.
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Ya, I have muscle twitching 24 hours a day. It started 2 years ago. It was one of the symptoms I had never experienced that led me to a neurologist and my ALS diagnosis. Twitching is exacerbated by any physical movement and stress. They are not painful. I do not take any medication to treat it.
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Was twitching your first and only symptom? This is scaring me.
And how long until you were confirmed by neurologist after twitching started?
My twitching started 6 weeks ago,last Friday neuromuscular specialist said all my testing is normal but I think maybe I went to early
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I had my first major symptoms of ALS in 2006. Since then I have had strong Spasticity but very few to no twitches. Sometimes I startle especially when drinking coffee or listening to music with a headset.
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We do atrophy from ALS and it is not only due to lack of movement as a result of ALS. I can prove it to be true based on my own hands which I constantly have been using.
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Hi all,
I’m new to this forum. My grandfather died of ALS in his mid 60’s. All I remember is him dragging is foot when he walked. Now, my 85 yr old father seems to fit the bill for respiratory onset ALS. We’re bringing him to an ALS clinic next week and will also have genetic testing done. For the past 3 months, since I realized what his dx will probably be, I’ve been twitching. Mostly my left calf, but also in other spots. My toes cramp occasionally, but they’ve been doing that for years. I’m 55 and already have severe health anxiety and depression …this has put me over the edge. I struggle with whether or not to get tested..genetically and clinically. Trying to live in the moment but not doing it very well. Thank you for any input or advice you might share. ?
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I have twitching in my arms and legs. Sometimes spasms that cause a lot of pain. Was managing slightly by increasing magnesium, potassium and calcium.
My neurologist put me on gabapentin, it worked a little but as I got closer to the prescribed amount (400mg) I started having disturbing side effects. Gave it up and went back to supplements.Then my urologist prescribed Tamsulosin for an unrelated prostate issue. Since then the twitching continues but the painful cramps have stopped.
Don’t know what to make of it. But enjoying nighttime free from pain, at least for the time being
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Most of my muscles twitch. I feel them in the face, arms and legs. They don’t bother too much except when they turn to cramps. Those hurt.
Started adding foods high in potassium, magnesium and calcium. Added some supplements as well. These helped with the cramps and Charlie horses. Not completely gone but livable.
At this point my neurologist prescribed Gabapentine. She wanted to work up to 400mg a day. Starting 100mg daily and ramping up. Even at 200mg I saw some benefit. At 300mg I experienced side effects I didn’t like. I gave up Gabapentine and went back to diet.
Unrelated to ALS, my urologist recently gave me a prescription for Tamsulosin for a prostate issue. I take 4mg a day and have not had muscle cramps since starting.
The twitching remains but it doesn’t bother me.
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