Benign fasciculation syndrome (BFS)

Hi @falconhawaii - There is another discussion that members have posted about twitching in the toes that might be helpful.

-- Toe twitching/fasciculations?!:
https://connect.mayoclinic.org/discussion/toe-twitchingfasciculations/

Yes, for a number of weeks I was having twitching in the toes when at rest, mainly when trying to sleep. I started wearing socks to bed and it seemed to help for some reason. I also frequently get the numbness in fingers but I attribute this to poor circulation. For what it is worth, I started taking calcium supplements several weeks ago and most of the my BFS symptoms have subsided, though I still get twitching and spasms almost every day. I noticed in my last blood test that my calcium levels were on the low side. Hope this helps.

Just Bfs

What is BFS?

So I shared this on another forum, and people found it useful, so perhaps it might be useful here too. I've kept this journal for about two months now. I have tracked blood pressure, stool, the food I eat, the twitching symptoms, and sleep pattern. Here's what I've noticed:

1. If I get a minimum of 7 hours of sleep, without waking a single time during that sleep, then the following day I have barely any twitching at all, almost none. To achieve this I try to stop using all digital devices 2 hours before bed, I take Melatonin 6mg, I use a nasal strip, drink non-caffeine tea(I prefer Yogi Bedtime tea), and take an antacid.

2. If I wake up even once during the night, regardless of how deep I am sleeping, the following day is absolute twitching nightmare. Like today, I did not sleep well last night, woke up a few times briefly, and now today my right and left hand palms are twitching like crazy.

3. Any kind of dairy(cheese, milk, yoghurt, ice-cream, butter, even butter as an ingredient in cake), spicy food, beer(specifically, not wine or other things), if eaten any time after 7PM then I will have a hard time sleeping and the following day is an absolute nightmare.

4. B12, D, Multivitamins do absolutely nothing, and Multivitamins sometimes aggravate the situation.

5. Magnesium Glycinate might actually be helping. The occasions where I take it, and this is likely a coincidence, but shortly after I barely have any fasciculations at all. So far I have been taking 400mg - 600mg per day. From what I understand, it has to be specifically Magnesium Glycinate, not some mix of things or Glycinate + something else. I have met others who claim it has helped reduce their twitching by 80-85%.

6. Betablocker, not convinced it does anything at all.

7. If I eat dinner after 8PM then, again, sleep will be disturbed at least once and I will have a miserable day the next day.

8. I get about 4-5 days every month where I feel great and have almost no twitching, and those days almost always coincide with sleep being uninterrupted.

Those are the patterns I've found so far, at a glance and not looking deeply at the data I've collected. So I suspect(not confirmed) either:

A. I took exforge(Amlodipine and Valsartan) every morning for several years, and stopping it abruptly for half a year and starting again screwed up my body somehow. Or long term use of this drug did something to disrupt my metabolism.

B. My deviated septum got worse somehow and now my sleep is terrible, which, over time has resulted in fasciculations and sometimes pain. Or something else is going on in my body to cause poor sleep. Thus possibly sleep apnea is the cause.

C. I have subclinical hyperthyroidism with my TSH always at 0.45 or slightly below and T4 always near 19 or so. DNA test says I have a very high chance of thyroid cancer, despite having an ultrasound that says it is totally normal.

D. The many many "benign" kidney cysts I've got(something like 15+) have something to do with it, despite the specialist saying they are nothing to think about and cause no symptoms at all.

or

E. That I have some digestion issue and became lactose intolerant(I'm 40 years old now) and possibly intolerant to something else and this long term has resulted in BFS somehow.

That's what I've got so far. Would be curious if other people also started keeping a careful journal to see what they experience and compare.

DX with BFS on Dec 15 2022 BUT twitching increased
I complained about my weak legs to my PCP he referred me to an ortho who asked me to get a leg EMG in early Oct 2022. At the time of EMG my toenail finger was twitching and moving by itself.

EMG was clean so ortho didn’t help further, back to PCP he ordered blood test. I was b12 and D deficient. I started taking b12 and D but i started having twitching all over body including glutes, back thigh, calf, eye and lips.

Then i visited a neuro on Dec 15, she checked me for clinical weakness and reflex, said I had mild hyper reflexia for knee test. I was 5/5 on all tests she did. I told her about my fear of als and she said lets do emg, I didn’t tell her that i had done an emg before but just for leg.
She said i have bfs but for my relief will do emg.

Since then twitching has only increased and now I feel my right footwear is feeling lose. i don’t feel any weakness in legs, can squat run jump fine. In addition I developed tongue twitching.

I have another emg on feb 1 and now I am really worried

Question: is there such thing has emg done 3 months early in case als?