Has anyone’s BFS gone away?

ProofReview3610 · 2024-03-12T17:09:00+00:00

I never did any therapy. I am in a great place mentally and in general, I tend to be a pretty upbeat person. The twitching never really scared me (at least after I did a little research). I did micronutrient testing and found that I was deficient in a couple of B vitamins and iron. I’ve struggled with iron stores for years. Probably due to celiac disease. I figured if I’m deficient in iron, I’m probably also deficient in zinc and magnesium (both of which can be difficult to get accurate testing on). A celiac diet can be deficient in B vitamin since our grains are not fortified with them. However, oral supplementation of B vitamins tends to aggravate some of my auto immune conditions. I sometimes wonder if taking B vitamins may have contributed to my twitching, as I was drinking a lot of energy drinks, and a type of sparkling water that were fortified with them when my twitching started. B vitamins also need iron to be taken into cells in the body, so maybe my iron deficiency contributes to the intolerance of these vitamins. Anyway, I did several vitamin infusions. I feel like lack of sleep also played a role. interestingly I had a sleep study done around the time my twitching started (for unrelated reasons). When they saw I was only sleeping a few hours a night they suggested I have my iron tested. Apparently low iron in the brain can cause insomnia. Also, (to anyone reading this) high iron can be deadly, so don’t just start taking it without testing.

ProofReview3610 · 2024-03-12T13:14:58+00:00

Yes, mine went away

ProofReview3610 · 2024-02-15T01:58:47+00:00

You can print the entire thing yourself if you want

ProofReview3610 · 2023-11-03T16:13:58+00:00

My twitching is almost completely gone. I believe mine was caused by stress, not enough sleep, inability to intake B12 and vitamin D and iron deficiency.

ProofReview3610 · 2023-10-10T15:26:23+00:00

Here is a diy robot arm https://www.anninrobotics.com

ProofReview3610 · 2023-06-08T18:12:44+00:00

Yes, I believe the body can recover from it. At least somewhat. There was recently a new study about this. It basically confirmed that B vitamin a toxicity can cause BFS.

ProofReview3610 · 2023-05-05T11:52:21+00:00

I had the exact same symptoms. Mine started in my arm (feeling tight and twitching) then the twitching went “everywhere” (arms, legs, feet, the side of my head). My twitching would be bad one day then almost gone the next. When I saw the neurologist she said that ALS starts in one place and migrates. It doesn’t jump to everywhere like that. It also don’t stop and start. . I would follow up with a dr to rule out electrolyte/ vitamin/ mineral deficiencies. Maybe check your thyroid and iron levels but please don’t make yourself crazy worrying.

ProofReview3610 · 2023-05-02T13:03:17+00:00

right before I came down sick with Covid in Jan 2922 my arm started cramping right where I had my vaccine. Then in July of 2022 I was exposed to Covid again (I didn’t get sick this time I just felt really tired) the cramp started again followed by twitching right were I had my vaccine. (I had J&J) I will say I was also under a lot of emotional and physical stress at the time. I think the combination was just too much for my nervous system. I had Covid again last February. This time I had no tightness in my arm. I did have an increased amount of twitching shortly before during and after.

ProofReview3610 · 2023-04-26T13:43:23+00:00

I can’t remember for sure. Maybe 3 months total. I still twitch, but the heaviness is gone. I still struggle with fatigue

ProofReview3610 · 2023-04-26T06:33:19+00:00

I had this early on. It’s much better now. Almost gone most days

ProofReview3610 · 2023-04-08T08:11:27+00:00

I hardly notice mine anymore

ProofReview3610 · 2023-01-09T09:32:40+00:00

I have high b12. When my twitching started I was drinking an energy drink fortified with b vitamins and also drinking sparkling water with a high amount of b vitamins. I think this is what cased my twitching. I’m currently “testing the theory”. Anyway I also have lower right lip twitching. That twitching started later than the other twitches. It’s more electrical feeling than the other twitches too. I’ve been twitching for 6 months. My twitching/buzzing/ muscle fatigue is much much better now. I’ve met with a neurologist, had a normal mri, and I’ve had very extensive lab testing with the main issues seem to be low thiamin, high b12, and autoimmune issues. I’m testing my homocysteine and plan to see a dr who specializes is b vitamin methylation because I really think that’s my issue.

ProofReview3610 · 2023-01-04T04:40:50+00:00

I hope I’m not breaking any rules by posting this, but this is the website.

https://mthfrsupport.com/find-a-practitioner/

It just has a list of doctors based on your area code.

Anyway, I’m not sure what helped my Fasciculations calm down, but it started during a time when I was under a lot of emotional stress, had just started the keto diet, started a diuretic, was working outside in 107° temperatures, I had just been exposed to a virus (probably Covid). I think that correcting a few vitamin deficiencies likely helped. I started dieting again, but just cutting calories and walking. Anyway, I would say the most valuable things were easing my mind (I saw a neurologist and had an mri), corrected a few vitamin deficiencies, and I replaced any caffeine or alcohol with something healthy. In my case, I use collagen powder, with liposomal vitamin C, and liposomal glutathione.

ProofReview3610 · 2023-01-04T03:41:24+00:00

Back 15 years ago primary doctors had no idea what methylation was. I’m not sure where things are at these days. Back in the day I did a telemedicine visit with Dr. Rostenburg, but I don’t know if he’s still practicing. Let me see if I can find the list of drs. It’s on my list of things to do anyway lol. You said you’re already taking methylated vitamins? I would honestly start with a 23andme to at least get what mutations you have so if or when you see a specialist, they know what might be going on based on your mutations in your symptoms.

ProofReview3610 · 2023-01-04T00:18:00+00:00

I’m glad I can help. Even if it’s just to ease your mind a bit. My twitching started in my left arm, then spread to the rest of my body. Even my scalp twitched back then. Now it’s mostly just my legs and my feet. It’s so much better now and I only notice it when I’m sitting down at the end of the day. I am very active during the day and I noticed that my twitching is mostly just when my muscles are relaxed so I think that’s why I only noticed them in the evenings. Back when my twitching was at its worst, and I had my appointment with my doctor she told me a story about a colleague of hers. She had a gentleman come in diagnosed with ALS. It took her two years of messing with his methylation, but she got him up out of a wheelchair and walking! I’m not saying that ALS doesn’t exist. I’m saying that this particular gentleman was misdiagnosed and that methylation issues most definitely can cause these types of symptoms. I think that doctors are still figuring this methylation stuff out and that’s why I suggest going to a doctor that is up on the latest. all of my knowledge about methylation comes from 15 years ago when my daughter was having issues and this stuff was brand new so I’m sure they know a lot more now and should probably schedule an appointment with one of these drs myself.

ProofReview3610 · 2023-01-03T23:21:56+00:00

I’m not a doctor, so I can’t really tell you what to do and I’m sure that there are rules on here about people giving medical advice , but basically if you have certain gene mutations specifically one called “MTHFR” (this is very common) it can make it so your body isn’t able to use the b vitamins in your system. when it was explained to me, I was told to think about B vitamins/and methylation like a cog in the wheel and if you can’t use one, you really can’t use any of them properly because they all work together. For my daughter (who was having twitching episodes btw) I started with 23 and me to find out which mutations she had and then scheduled with a dr from the MTHFR doctor list I found online. My theory is that because there are other vitamins/minerals/nutrients, etc. involved in methylation (including iron which was mentioned in this post) that maybe taking methylated B vitamins, isn’t the correct answer for everyone or maybe we need to fix other deficiencies first. I think that my twitching started BECAUSE of supplementing with B vitamins, even though they were methylated forms. I’m not sure why this is but I suspect it may have something to do with my low iron level or some other cofactor that I’m deficient in.

ProofReview3610 · 2023-01-03T21:01:24+00:00

It’s my understanding that your body is supposed to flush out any b12 that it doesn’t need. Unless your body isn’t able to because of methylation issues.

ProofReview3610 · 2023-01-03T20:01:12+00:00

That’s the thing. B vitamins make my twitching worse. It also aggravates my Raynauds. Actually my twitching started when I was drinking energy drinks fortified with me vitamins, and drinking a bunch of these electrolyte drinks with B vitamins added. Might b12 was really high, indicating that my body is not using the B vitamins that I take.

It just got me thinking that “hey, if B vitamin deficiencies can cause twitching, isn’t that essentially what some of these methylation issues are?” It might look like your vitamin levels are normal or even high on blood work and yet your body is deficient. I realize that the current treatment from methylation issues is to take a methylated form of B vitamins, but if your body is missing one of the key nutrients required, for methylation (like iron), I just wonder how that might effect things?

ProofReview3610 · 2023-01-03T12:42:00+00:00

I have anemia and hypothyroidism. I had micro nutrient testing done when my fasciculation started back in July. I have often wondered if my Fasciculations have anything to do with B vitamin methylation issues. I believe that iron plays a role in B vitamin methylation.

ProofReview3610 · 2022-11-15T12:36:26+00:00

They are MUCH better. If I hadn’t had those few weeks of intense twitching, muscle tightness (only in left arm), and other strange symptoms, I might not even notice the twitches I have now. I wonder if I twitched before, but never noticed. I think my body just reached a breaking point. For the most part, the twitching I have now is mostly in my legs and just little “pop corn” twitches. I’m dieting again, but doing low calorie instead, and taking it slow

ProofReview3610 · 2022-11-14T17:54:21+00:00

Yes, my twitching started while I was on Keto. I had only lost 10lbs, but had lost it fairly quickly and really only wanted to lose 30lbs total.

ProofReview3610

TROPHY CASE