Friends, since I have started that gluten free diet it was pretty good, I had days where nearly no twitching occured. However, yesterday and this night was bad. I woke up at 5 AM and felt twitching in my thigh. Then few beats in the calf, then my arm started to twithc on more places. All within one minute! Does it happen to anyone? I am so dissapointed. Also I experienced something I had never before - I had a fasciculation frequency of which was like 10 per second! It was extra fast, like cell vibration but I could see it.
Gluten Free Diet & Twitching: Help?
- Thread starter TwitchyMD
- Start date
JohnnyRocket
Well-known member
This happens to lots of BFSers, all the time. Twitching can decrease and increase for reasons we don't understand. Its great that you had some reprieve from it, even if temporary, but don't expect it to go away permanently. This is one reason why I don't advocate the constant searching of cures for our condition. It often creates a situation where our anxiety is tied to the level of symptoms which shouldn't be the case...especially for someone who has dealt with it for so long.
It's too bad that our good friend, Dr. Singh, cant take five minutes out of his day and log onto bfsforum.com. This way he would easily learn that BFS is real and common. He could read stories like yours, Johnny, Bill, Sean and many many more on here who are still alive after five years and proof enough that this can indeed be benign.
Ghayes, yeah. Well his timeline was that after 5 years it can be securely diagnosed as benign. I used to chat with him via email but I was getting impression his english is even worse than mine. He stopped responding once I told him I have it widespread for years. I really do not think he is ALS specialist rather than simple neurologist who did one paper on fasciculations. His statement that BFS is only in legs goes even against Mayo study..
Docen,I have been logging my twitching frequency, and whether I have stuck to my diet (gluten free, as well as other things I am sensitive to - e.g., dairy, strawberries, etc.) and am noticing a monthly pattern so far - less so related to my diet. I'm going to keep logging them, but there can be days I can go with hardly any twitching and then days when the twitching is out of control (and I also get those several per second ones, when it's really bad). I'm starting to wonder if it's hormonal for me somehow, since I see my twitching frequency matching the twitching the previous month. Of course, I have only done this for a little over two months, so it will be interesting to see if this is always the case.But, what you're dealing with I think is so common. If you think the gluten is affecting your twitching, keep to your diet. I don't think you'll see a miraculous change over night, but over a longer period of time.My thought is that if we had something instigate our twitching (e.g., gluten, a virus, thyroid issues, Prilosec, whatever...) then very likely whatever caused it may have caused some permanent damage to our nervous systems. Therefore, if you stop whatever it was, while it may subside, it may never go away...Just a thought. Maybe a negative one, but I hear so many people say "My twitching started after _____", and then never fully stops. But, for many people it seems to subside and improve, with flare ups.Mitra
christinasgirl123
Well-known member
You guys better stop praying to those golden neuro cows that are JUST PEOPLE and listen to your own brain. Greg, how many engineers do you know that are not the smartest but know how to present themselves like genius' and get paid more than others? And Docen, looking around in your study class.....are you convinced that the people around are the most CLEVER in your country or maybe they are just quite clever people like hundreds on this board whose parents just had enough money to pay them a good education????? Gosh, I dont f**cking CARE if some Dr. Singh or whoever BELIEVE in widespread fasciculations. This is not religious class, noone cares for believing, it is about seeing the facts of what is the most likely. It is hilarious even doubting BFS for one second after reading on this board. After hearing citated at least HUNDREDS of neuros on this board, all agreeing that they see stuff like that and that- from their experience-it is benign. I almost get allergic reactions whenever I hear that name...see, BFS does not get more benign if Dr. Singh believes in it or not.....it has always been benign and always will be. And Docen, I hope you have ealized NOW after you had almost stopped twitrching for a while that you do not have MND. Now get your brain cells in a row and SEE that this cannot be MND. Or -with fasciculations as a sign of dying nerve cells- that your nerve cells have decided:" oh, we are so sick of dying, let's just take a brake from that, produce some new channels, have a few days of fun and then continue dying....."????????? Please print out "I ALMOST STOPPED COMPLETELY TWITCHING FOR 5(or whatever) DAYS" and pin it on the wall over your bed and read it every morning . This clears you. OK, actually your whole story cleared you from the beginnings, then again you were cleared by the time has passed and most likely hundrets of other things and now this. YOU ARE FINE. Damned. Believe it. You are absolutely wasting your time. Go and visit the oncology kids station at the hospital you are learning at and have a look at the crap that is happening there and be glad that all you suffer from is a huge load of anxiety and some muscle twitches.@ mitra: yes, for me the pattern was DEFINATELY linked to my hormone cycle. You know I am almost completely rid of it all, but I still get mini-flare-ups in my hands every 4 weeks 
Chrissi I know, you are right..dont get me wrong, I do not give a f*ck about dr.Singhs opinion after mail conversation with him, just the neuroscientist in me keeps whispering that something must stimule my motor neurons and even the cranial nerves which excludes spinal cord issues etc. I did have issues with thyroid but it was long time ago..but widespread fasciculations caused by hyperthyroidism are known and that dr.Singh obviously did not know..neither he knew about CIDP etc..I do feel better now, thanks 
christinasgirl123
Well-known member
So we should all agree on this board that this guy does not know a lot about fasciculationsand the causes and this leads to the conclusion that we just throw eveything he ever said an wrote and has to do with fasciculations into our mental dustbin.
BarbiePetals
Well-known member
Who is Dr. Singh? I guess I have been away for way too long.
BarbiePetals
Well-known member
You hit the nail on the head Raindog. I don't know why people read these studies. It just fuels their anxiety and really, there is no point in even reading about it.
MarioMasher
Well-known member
And then there are the people who read these studies, get scared, and decide their next move is to come here and scare everyone else with them. Clearly those are my favorite types of people on bfsforum.com. Well if I'm going down the anxiety spiral, you might as well come down with me too.It is reasons like this why everyone needs to leave this board eventually.
Thumbs up to Mario! I am so sick of reading these fear fueled posts that get everyone so worked up. I know that this is an open forum but TwitchyMD you have been around long enough to know how these post effect people, esp. newbies. IMH opinion if you are still freaking out over a certain issue, PM a vet from the board and not send the rest of us down the rabbit hole with you! Sorry these posts as you can tell really p**s me off!Shelly
JohnnyRocket
Well-known member
I try my hardest in attempting to understand people that act in this way. Yeah, they bring up studies, half-truths, or heresay which scares a few hundred people but I'm fairly sure there is no ill intent. I mean even if they should be waaaay past this after so long, are they not entitled to break down in fear and come for help?...even if going about it the wrong way? Maybe they don't know anyone welll enough to feel comfortable with a PM or want as much feedback as possible. Even though I try to understand, I still get really *beep* off. lol Oh well. As long as this is an open forum, this crap will happen.
WindyCityGentleman
Well-known member
Bfs is like this, I had almost no twitching for 2 months and now I have it again all over my body with pain and weird aches:/... bla bla... I goes away and it comes back... Just like that. Just wish to know why?....
MarioMasher
Well-known member
If it was a virus floating around your system, that would explain it. Viruses move around and shift and change, who knows where it will affect you some days.
I think the problem is TMI. There is so much info available to us through our computers and there are some people that just can't learn their lesson and stop incessently researching diseases and disorders. They then freak themselves out more and bring back the "Research" to the Board so that they can have one of us disprove the article and make them feel better. Of course what it actually does is fuel a mass twitching hysteria among the Board members including those that stopped spending their entires lives doing their "Google" research. Those people then go off and start doing more research and a viscous cycle emerges.