My BFS Experience and What I've Learned So Far

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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My BFS Experience and What I've Learned So Far

Postby elliottok on July 16th, 2014, 2:48 pm

Hey Everyone,

I'm a 25 year old male. Around late October of last year I started getting some muscle twitches in various parts of my body. They would stay in the same spot for a day or so and then it seemed they would move to a new location. I didn't think much of it at first - after all, we've all had random muscle twitches at one point or another. However, these twitches soon developed into something I had never experienced before: widespread twitching all over my body. At night, if I moved or even stretched a little bit, it would send the involved muscles into a cascade of twitching. If I sneezed, the muscles in my ribs, abdomen, and diaphragm would twitch. As this widespread twitching continued over several weeks unabated, I began to become seriously concerned. My concern turned into fear the day my tongue began to twitch. I remember it clearly - I was laying in bed and felt the strangest pop, pop, pop, on the right side of my tongue. It was obviously a fasciculation, and if you've ever had them there's not doubt in your mind. You can feel them very easily and there's no mistaking it. Having read all about ALS and tongue twitching, I almost had a complete break down at that moment. I was convinced I had ALS. I scheduled an appointment with my GP and he referred me to a neurologist. The neurologist was very dismissive of my symptoms - before he even began his examination he was already saying "I seriously doubt there's anything seriously wrong with you, but I'll do the examination anyway." He asked about my twitching, but of course, I didn't exhibit any twitching during the appointment. Isn't it funny how your body seems to turn off the twitching right when you're at the doctors office? Anyway, he said it was probably benign twitching, but he ran blood work and scheduled me for an EMG. Blood work came back fine - only problem was an elevated parathyroid hormone, but calcium levels were in normal range. More on that later. Went in for the EMG on my left side, and everything was clean. They didn't pick up any twitches on any part of my body. Once again, funny how that works. Neuro said he was almost positive that I didn't have ALS as I had no weakness and an absolutely clean EMG. While my symptoms do seemed to have improved generally since the time they started back in October, I still suffer from daily twitches and hot spots. Of course, some days and weeks are worse than others. And some days the twitching is so bad that I consider scheduling another neuro appointment to get a second opinion. I even get muscle cramps, although rarely, and it's hard to say whether they're related to the twitching or just normal cramps. Got a charlie horse in the middle of the night back in May, which has never happened to me before. Then a couple weeks ago got a nasty cramp under my chin during a yawn - also something that has never happened before. Through it all, the important thing is that I have absolutely no weakness, which is great news. The one thing that I have found that drastically reduces the amount and severity of twitches is WATER! I find that when I make an attempt to stay very hydrated, my twitching decreases dramatically. It doesn't completely go away, but it *almost* becomes a non-issue. I also find it beneficial to cut back on caffeine intake. I have one espresso each morning, but I stop myself there. Too much more than that and I can definitely notice that my twitching is worse. I'm waiting to hear more about my elevated parathyroid levels. Don't know if that could be causing the twitching or not, but it's worth a look even if it isn't. Anyway, just wanted to share my experience and thank the many regular contributors here. Especially people like Bobajojo who have had tongue twitching just like I have and have written extensively about it. It's extremely reassuring to read about other people who are experience the same BENIGN symptoms that you are. Helps break the debilitating cycle of worry and depression.
elliottok
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Re: My BFS Experience and What I've Learned So Far

Postby Arkansan on July 16th, 2014, 3:44 pm

Glad you are doing better and that reading about others experiences helps. I know the fear and loneliness of it can be crippling at times. Funny that you say water helps with yours because sometimes I have noted that Gatorade makes a difference for me. Welcome to the board by the way, everyone here is really understanding.
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Re: My BFS Experience and What I've Learned So Far

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