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    • #13513
      Dagmar
      Keymaster

      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?

    • #13521
      Russell Cowger
      Participant

      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.

    • #13524
      Dagmar
      Keymaster

      That is so interesting that you found relief (albeit “some”) by adjusting your diet. Thanks for sharing your experience and solution.

    • #13526
      Jonathan L Maddock
      Participant

      When I started on Radicava, I noticed a decrease in fasciculations and intensity. An unexpected benefit for me.

    • #13558
      Dagmar
      Keymaster

      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.

    • #13563

      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.

    • #13572
      Lisa Bonahoom
      Participant

      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.

    • #13580
      Jacques
      Participant

      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.

      • #13589
        Dagmar
        Keymaster

        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!

    • #13588
      John Russell
      Participant

      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.

    • #13591
      Patricia
      Participant

      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.

    • #13592
      Dagmar
      Keymaster

      I agree Patricia — keep things in perspective…don’t sweat the small stuff…and always: adapt 🙂

    • #13593
      Lisa Bonahoom
      Participant

      I have to warn my doctors before they test my reflexes!  They are extreme!  I am afraid I will hurt them!

    • #13673
      John Lopynski
      Participant

      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.

      • #13678
        Dagmar
        Keymaster

        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.

    • #13674
      Jonathan L Maddock
      Participant

      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.

    • #13675
      Jonathan L Maddock
      Participant

      Oh, and to your question, I had some notable leg weakness prior to the twtching.

    • #13684
      Susana Rave
      Participant

      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.

    • #13695
      John Russell
      Participant

      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.

    • #13720
      Rudy Palenik
      Participant

      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.

      • #13728
        Dagmar
        Keymaster

        That is an excellent remedy Rudy!

    • #13723
      Rudy Palenik
      Participant

      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?

    • #14780
      Lori
      Participant

      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 🙂

    • #14786
      Romolo Pallini
      Participant

      Hi,

      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

    • #14789
      Lori
      Participant

      Thank you- we will try that.

    • #14795
      Marianne Opilla
      Participant

      Hello Lori,

      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?

    • #14800
      Eric Barnett
      Participant

      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.

    • #14801
      Michael Armstrong
      Participant

      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.

    • #14802
      Jonathan L Maddock
      Participant

      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.

    • #14810
      Lori
      Participant

      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 🙂

    • #14811
      Mikki Maini
      Participant

      I take liquid Magnesium Malate & Glycinate. I have no twitching now

    • #14812
      Curtis Mumpower
      Participant

      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.

    • #14813
      Rod Dalglish
      Participant

      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.

    • #14817
      Bill Hayden
      Participant

      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.

    • #14824
      Amanda
      Keymaster

      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.

    • #14825
      Michael Armstrong
      Participant

      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).

    • #14826
      Michael Armstrong
      Participant

      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.

    • #14827
      Lori
      Participant

      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 🙂

    • #14828
      pRex
      Participant

      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.

    • #14829
      Bill Hayden
      Participant

      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!!

    • #14830
      pRex
      Participant

      <div class=”activity-inner”>

      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.

      </div>
       

      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?

    • #14831
      Dagmar
      Keymaster

      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. 🙂

    • #14834
      Michael Armstrong
      Participant

      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.

    • #14866
      richard fredericks
      Participant

      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.

    • #14867
      Michael Armstrong
      Participant

      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.

    • #15204
      Jim Conner
      Participant

      I have the muscle twitches and muscle cramps also. The doctor at Mayos was fascinated by one muscle in my right shoulder that just popped away the whole exam, had its own rhythm. I have not found anything that seems to slow them down. I have tried a tens unit and it was not effective. I do take Magnesium tablets and CBD oil. I tried CBD cream on my lower back pain and it did nothing to help. The CBD oil has done very little or nothing. I do notice that exercise or moving does set the muscles off. I did my upper body workout this morning and my shoulders are hopping as I type. If I get up a night and use the bathroom my leg muscles will twitch, not my upper body. I am going to look into the Magnesium Malate & Glycinate.

      Good discussion.

    • #15592
      Susan
      Participant

      I did have some but then I stopped caffeine and ate well and gluten free too.  So my body is calm now

    • #15593
      Susan
      Participant

      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.

    • #15594
      Stephen Greer
      Participant

      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

    • #15597
      Danielle Uskovic
      Participant

      Hi Stephen

      You have some great advice.

      I’m interested in what supplements you are taking. Are you able to please share?

      Warmly Danielle

    • #15605
      Stephen Greer
      Participant

      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

    • #15608
      Dagmar
      Keymaster

      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.

    • #15613
      Jay
      Participant

      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

       

       

    • #15621
      Danielle Uskovic
      Participant

      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.

    • #15623
      Dagmar
      Keymaster

      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. 🙂

    • #15625
      Danielle Uskovic
      Participant

      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.

    • #15631
      Patricia
      Participant

      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

    • #16250
      Mandy
      Participant

      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 😂

    • #16256
      Lee
      Participant

      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.

    • #16263
      Gayle Lewis
      Participant

      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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