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Do you experience muscle twitching?
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This is such a weird disease in the way it progresses differently for everyone. My tongue (bulbar), left foot/leg are most affected. right leg somewhat. So far my torso has been excluded. I have fasciculations everywhere. My feet do involuntary jerks a few times each night as I’m trying to get to sleep.
Radicava infusions seem to slow the jerks & twitching down, but only on the days I’m infusing.
I just bought some magnesium pills. Thanks for the tip….I’ll give it a try.
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Thanks everyone for the sharing and suggestions.
Marianne-yes we do know about benign fasciculations and were hoping for that diagnosis, but the EMG showed nerve damage (done by an ALS neurologist) so that is why they diagnosed ALS.
Michael- do you too only have twitching? Were you also diagnosed based on your EMG?
thank you all 🙂
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I take liquid Magnesium Malate & Glycinate. I have no twitching now
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I began having twitching in my right bicep 4 maybe 5 years ago. Lightly at first then more prominent over a few months. Then spread to my left arm and then my legs. Noticed in2/19 that I was losing strength in my right hand and also began noticing muscle atrophy in my right hand at that time as well. By 9/19 was noticing significant loss of strength in my right hand and began losing strength in my left hand as well. Went to my pcp in 10/19, he noticed right away the atrophy in my hands and sent me for an EMG which led to examinations from 2 neurologists and an EMG specialist whom all agreed it appeared to be ALS. Received my “official” diagnosis from my ALS specialist 11/19. So far progression has been fairly slow affecting my hands. Beginning to feel a little weakness in my legs but still walking on my own two feet without any assistance for now. Twitching is constant but does subside while I’m sleeping. The more active I am the more the twitching but I’ve learned to live with it. Don’t even pay attention to it any more.
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I lived with restless leg syndrome (RLS) at night only all my life, as my muscle twitches became 24/7 it eventually led to my MND diagnosis. I know take Magnesium L-Threonate (2,000 mg) twice a day, I no longer suffer from RLS or MND symptomatic twitching / cramps. I also supplement with B12, Turmeric and CoQ10, however I believe that Magnesium L-Threonate is the major contributor to eliminating any fasciculations.
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Yes! When I was very first diagnosed in November 2019 it was only in my left arm. Soon my whole body felt like it was twitching. I started a regiment of CBD oil on recommendation of my Neurologist and after three weeks I am glad to report my twitching has diminished back to only my left arm, but even that seems to be milder than previously. Also I would say that anxiety will bring on bouts of twitching, so I try to stay as calm and anxiety free as possible.
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I’ve had twitching for years in my legs and hands, and recently it has started in other areas but no diagnoses. It is one of the symptoms that the team at the ALS Clinic keeps a close tab on for the pre-fALS study. They complete quarterly remote visits and 2 in person visits to the clinic each year. So, six times a year they update information and redo surveys and collect blood samples.
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Lori – No, First noticed twitching a couple years ago – very minor. Now, I’ve lost my feet and lower legs, losing the rest of me faster than I’d like, especially hands, now noticing trouble breathing, and was put on a BiPAP machine, which helps at night. So far, speech is unaffected, but I have to use 2 hands on the mouse. Graduated over the last year from cane to walker to rollator to motorized wheelchair (next month).
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Lori – re Dx: 3 rounds of EMG and NCC in 3 facilities over 2 years. They all wanted to call it neuropathy, until a sharp doc at Stanford expressed concern about MND – ALS Dx followed 2 months later.
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Thanks again everyone. Sounds like my husband is in the early stages of ALS and the Dr just hasn’t seen another patient present like him. Praying it is a slow progressing one.
Hugs to all of you 🙂
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Hi. New here, early stages, first post.
I don’t like fasciculations because to me they connote progression. They’re like a swarm of determined little de-construction workers to whom I want to give an indefinite coffee break. I’ve taken several approaches, with promising (but not to say certain or measurable) results.
1) I too have had luck with topical CBD cream/oil. The best I’ve found is Traumica Maxx (no affiliation), 18% CBD, which my friend Diane suggested applying twice, 10 minutes apart. I concur. I can’t state medically that it gives pain relief, but it is undeniably soothing and its supplemental botanicals are very pleasant.
2) Massage. I’m blessed with a SaintAngel (partner) who massages my uprisings (twitching quads/vastus/calves) providing AMAZING relief.
<p style=”text-align: left;”>The <span style=”text-decoration: underline;”>combination</span> of 1) and 2) above (massage with CBD product) is <span style=”text-decoration: underline;”>ideal</span> and literally leaves my muscles “singing” with thanks. I should note that coconut oil is a good additive for a better “slide” and may have its own therapeutic qualities as several studies indicate.</p>
3) Stretching/Foam roller/Exercise. If I miss stretching for one day, I really feel it. Our muscles want to cramp, contract & spazz given the slightest opportunity; getting on the floor, keeping them lengthened & modestly exercised (recumbent cycle) seems to calm them down. I don’t ignore seemingly-unaffected muscles & tendons; tight hamstrings can really mess up my quads, for instance. Resistance bands are great for this, making it easier from a variety positions.
* I do believe over-exertion, on the other hand, has an opposite, detrimental effect.4) Heating pads – may not quell twitching, but soothing.
Now for my brilliant hypothesis.
5) Sauna Blanket. Again, no affiliation; there are many different models available…
After reading research on the effect of Heat Shock Proteins and their chaperoning function on misfolded TDP-43 protein aggregation (there’s a mouthful!), I was curious how I could self-trigger HSF-1 (heat shock) response. Trials of arimoclomol (a chemical trigger of heat-shock response) are full, and dammit I want my proteins folded as properly as my t-shirts. I’m thinking: if raising the body’s core temperature can make this happen, then it follows that taking a sauna is worth a shot. So I ordered a sauna-blanket contraption online and – lo and behold – it works exactly as advertised and is a warm, blissful retreat. When the timer clicks off, I’m often fast asleep. Obviously <span style=”text-decoration: underline;”>I make no medical/scientific claims and recommend consulting your doctor first,</span> but have found this to be a gentle, soothing & comfortable reprieve, possibly reducing the frequency & intensity of muscle twitching. I’m still trying to determine the optimal temperature and duration for the above; if anyone has insights, please advise.
I can’t speak to TDP-43 effect, however; I loaned my electron microscope to a neighbor working on a tanning-bed cure for Coronavirus.
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I would like to ask if anyone has suggestions on how to tone down “a high startle response” Everything seems to startle me? I stepped on a pebble, jumped in the air came down on the front of my foot and fell backwards. A fractured toe later I watch every step now. But my cell phone ringing will make me jump. UGH!!
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RE-POST OF PREVIOUS – apologies, new to WordPress formatting!
Hi. New here, early stages, first post.
I don’t like fasciculations because to me they connote progression. They’re like a swarm of determined little de-construction workers to whom I want to give an indefinite coffee break. I’ve taken several approaches, with promising (but not to say certain or measurable) results.
1) I too have had luck with topical CBD cream/oil. The best I’ve found is Traumica Maxx (no affiliation), 18% CBD, which my friend Diane suggested applying twice, 10 minutes apart. I concur. I can’t state medically that it gives pain relief, but it is undeniably soothing and its supplemental botanicals are very pleasant.
2) Massage. I’m blessed with a SaintAngel (partner) who massages my uprisings (twitching quads/vastus/calves) providing AMAZING relief.
The combination of 1) and 2) above (massage with CBD product) is ideal and literally leaves my muscles “singing” with thanks. I should note that coconut oil is a good additive for a better “slide” and may have its own therapeutic qualities as several studies indicate.
3) Stretching/Foam roller/Exercise. If I miss stretching for one day, I really feel it. Our muscles want to cramp, contract & spazz given the slightest opportunity; getting on the floor, keeping them lengthened & modestly exercised (recumbent cycle) seems to calm them down. I don’t ignore seemingly-unaffected muscles & tendons; tight hamstrings can really mess up my quads, for instance. Resistance bands are great for this, making it easier from a variety positions.
* I do believe over-exertion, on the other hand, has an opposite, detrimental effect.4) Heating pads – may not quell twitching, but soothing.
Now for my brilliant hypothesis.
5) Sauna Blanket. Again, no affiliation; there are many different models available…
After reading research on the effect of Heat Shock Proteins and their chaperoning function on misfolded TDP-43 protein aggregation (there’s a mouthful!), I was curious how I could self-trigger HSF-1 (heat shock) response. Trials of arimoclomol (a chemical trigger of heat-shock response) are full, and dammit I want my proteins folded as properly as my t-shirts. I’m thinking: if raising the body’s core temperature can make this happen, then it follows that taking a sauna is worth a shot. So I ordered a sauna-blanket contraption online and – lo and behold – it works exactly as advertised and is a warm, blissful retreat. When the timer clicks off, I’m often fast asleep. Obviously I make no medical/scientific claims and recommend consulting your doctor first, but have found this to be a gentle, soothing & comfortable reprieve, possibly reducing the frequency & intensity of muscle twitching. I’m still trying to determine the optimal temperature and duration for the above; if anyone has insights, please advise.
I can’t speak to TDP-43 effect, however; I loaned my electron microscope to a neighbor working on a tanning-bed cure for Coronavirus.
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Addendum: Has anyone tried those T.E.N.S. electrode devices (like Dr. Ho’s) on ALS related atrophy/twitching? I recently tried hooking up to my mother’s unit and it TRIGGERED twitches exactly like fasciculations! It seems like playing with fire but I swear after disconnecting (15 min) my quads felt more comfortable & less active. Thoughts?
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Hi Bill – – I can relate 🙂 Doorbells, action movies, a “boom” from outside, and more…and I’m suddenly a cat hugging the ceiling!
I don’t have a quick resolve for you, other than to get used to it. I maintain my mindful attention in the present moment and/or awareness of what’s happening around me – – for example, getting lost in thought, I’m more prone to startles. Also, learn to anticipate situations where the reflex will happen (maybe not walk barefoot; to avoid stepping on rocks?). And, get used to laughing after it happens…we pALS do have strong reflex reactions… I find the humor in it, and that helps diffuse the situation and relax my body. 🙂
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Bill – I never had that problem. Very rarely do I startle over anything, and it creeps my wife out. However, if I walk barefoot over a grain of sand on the floor at night, I react from the pain, but I wouldn’t call it a startle reflex.
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Holy cow, this post has traction!
My ALS was very pronounced on my left side. The right side was high functioning. Hyper-reflexia was more pronounced on the left side. And fasiculations were limited to that side as well. Life was good. I only had a 1/2 case of ALS.
I still remember the night of twitches in my right leg. That was an un-welcomed visit.
Fast forwarding two years, the twitches are pretty rare at this point. But the spasms are intense and only occur at night. I am rewarded with a spasm any time I change sleeping positions and extend a leg or arm. Cramps sometimes come along for a ride.
I am appreciative of this collective insight. There are lots of ideas to try. Many thanks for your openness and sharing.
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A couple years ago I had pretty bad leg cramps at night. My primary care doc at the time recommended vitamins B1 & B12, and darned if it didn’t work. I’m going to start taking it again to see if it affects my ALS. Got doubts, tho.
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I did have some but then I stopped caffeine and ate well and gluten free too. So my body is calm now
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I did have some but then I stopped caffeine and ate well and gluten free too. So my body is calm now
also B12 and D3 and other vitamins and zinc.
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All,
There have been many great posts and sharing of experiences on this topic and others. I have been a person living with ALS since early 2017.
In addition to all of the supplements and stretching, I focus on a diet of 80-100 g. or more of protein a day to feed the muscles, etc. Protein shakes are an easy way to help keep up the weight and provide fuel to stay in the fight. In addition to all the supplements, I have also had success with chiropractic adjustments (weekly) that target legs/cramps and neck.
Meditation and prayer before bedtime also helps on so many levels. Live in the moment and be open to experimenting. Every day is a gift; that is why it is called the present.
Carpe diem,
Stephen
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Hi Stephen
You have some great advice.
I’m interested in what supplements you are taking. Are you able to please share?
Warmly Danielle
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Danielle
In addition to supplements, I take both Radicava (started 9/17) and Riluzole (started 9/19).
I take many supplements based on the Duke ALS clinic study of 45 known ALS “reversals” that is published on the ALS Untangled site. I have also leveraged recent research linking microbiome health in the gut and neurological function. ALS can take away many things, but not hope.
Aloe Gut Health – 5ml – 1x
Berberine – 500mg – 3x
B-12 Complex – 1000mcg – 1x
Centrum Multi Vitamin – 320mg – 1x
Copper – 2.5mg – 2x
Digest Basic / Essential Enzyme – 100mg – 1x
D-3 – 25 mcg – 1x
Fish Oil – 1000mg – 1x
Glutathione – 500mg – 1x
L-Carnitine – 500mg – 3x
L-Glutamine – 1000mg – 1x
Luteolin – 100mg – 1x
Probiotic -50 Billion live – 1x
Restore Gut Health – 5ml- 1x
Spirulina – 500 mg – 3x2x
Turmeric / Curcumin – 1800mg – 2x
Zinc – 30mg – 2x
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Stephen – – You do realize that this list is of the supplements is only a compilation of the various supplements common among the 45 ALS reversals that Dr. Bedlack is studying. No one took ALL of them… Dr. Bedlack is examining each supplement one-by-one (starting with Turmeric) to ascertain if that particular supplement contributed to the reversal.
I try to keep up with the latest research, and as far as individual supplements go, I believe many on this list do not have a direct effect on ALS. Unfortunately, they are an unneeded expense for pALS and only line the pockets of the supplement companies.
Plus, taking mega-doses of supplements without medical supervision is self-medicating and carries a risk of adverse reactions.
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Dagmar,
Totally agree with you and Stephen, thanks so much for sharing. All information is useful and warrants further individual review and research prior to subscribing.
however , since i love this forum and all of its members , i will add one more supplement to this list – which by the way is being recommended by my ALS clinic (top 6th in U.S.) in addition to the the standard protocol ( Riluzole, Radicava), and that is TUDCA. Please research with your doctor prior to taking.
Now back to topic – i take a number of supplements plus Radicava plus Riluzole and still twitch like crazy, so again it comes down to faith and trust that some combination of drugs, supplements and positive attitude will take hold. ALS strikes each of uniquely.
best wishes to all
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