Pitan (Mesa, Arizona) on 04/05/2013

Below is my journey to this healthier way of eating...

I also, have been diagosed with benign fasciculation syndrome. It started a in March 2012. I was in grad school, so I did alot of sitting (studying, writing reports, sitting in class), and a lot of unhelathy eating. The only thing I did stay away from was caffeine (except in chocolate). I relied on sugar as an energy source. The only other thing that I know I did around the beginning of my twitching was, I planted grass and ended up getting the fertilized soil all over (chemicals, possible pesticides). Anyway, I'm not sure what was the catalyst for the continuous twitiching, I just know I had it. Mentally, it took a toll on me. Here I was in a motor speech disorders class and had learned all about neuromuscular degenerative disorders. In addition, I had just learned that my gradmother on my father's side died from ALS. Clearly, I was worried. I went to the doctor and my doctor said, "I don't know what it is", had me do a couple of squats, made me resist against her pushing my arm down, and then said come back if I have true weakness and slurred speech. Well, of course at that point I would, but why should I wait and not find out what was going on. I asked for a referral to a neurologist, which she obliged, but since she hadn't done any CT's, or MRI's, or really anything but a CBC, I had a long wait. Mentally, I couldn't wait I needed to put my mind to ease, or begin soem type of treatment. I ended up at a neurologist who didn't have the best reviews, the office wasn't the most cleanest office I've been in, and his bedside manners weren't any better. He did an EMG which came out clean (not ALS thankfully) and did not feel it necessary to do an MRI (maybe to check for MS). He said I had BFS. Of course, I had already looked this information up before so I knew what that meant. I've had twitching ever since in every muscle imagineable (tongue, bottom of feet, etc...).

Replied By Donna (Philadelphia, PA) on 03/20/2024

My twitches, mostly in lower legs, started in my late 40's. Saw neuro, had EMG and nerve conduction studies, diagnosed with BFS. Told me nothing else helpful, only that exercise will make it worse. I have also notice worsening of symptoms with sugar and processed carbs. To the point that it will cause the twitches to cramp. Totally annoying. Only plus is I lost weight and eat better lol. I wish I could find something to help. Trying magnesium now. The only things I have found are things that make it worse like sugar, simple carbs and dehydration. There doesn't seem to be a whole lot of research in this area. I'm thinking it's genetic as my mom has the same thing which started later in life. I will keep searching.