sparksense
Well-known member
Hello, friends-Every 6-months or so, I find myself scouring the ABOUTBFS boards looking for support, new information and possible breakthroughs. From time-to-time, I feel an obligation to post where I am in this crazy madness, and also to commiserate a bit. This August will mark seven years of constant twitching for me. My symptoms are very typical for BFS: Non-stop calf and in-sole twitching; random twitching elsewhere; and the most dreaded "hot spots" that usually set me way back in my anxiety recovery. For me, my top and most annoying hot spots are the eyelids and my right thigh. My eyelids usually always twitch when I sneeze or tense them up. Oddly, they even twitch when they come in contact with water. Hot spots usually settle in my lower left eyelid and can make their presence known for up to a month. Currently, my right thigh is in the midst of a weeks long flare up. Two straight weeks, one week off, now back at it as of this a.m. I had a really good and calm couple of years—which only means I didn't have a lot of hot spots—but the past year has been full of them. To date, I think I have twitched everywhere, with the exception of one place, which I don't even allow myself to think about in fear of it starting to twitch. Along the way I have also had a few episodes of paresthesia in my hands, and one recently in my chin. Which, after googling sent my mind on another bad journey. Fortunately these symptoms were self-limiting. I've had countless doctor visits and two referrals to a Neurologist. Along the way I have had an MRI, MRA, EMG and so much blood work I cannot count. No dubious diseases have been identified, just a slight vitamin D deficiency that has since been corrected. The second neurologist did little but listen to me and send me on my way. I have to admit, at times I feel cheated. Don't get me wrong, I am most thankful that this "syndrome" isn't life threatening, but I would still give anything to have a concrete DX, as well as a plan of action. While both Neurologists mentioned "benign fasciculations," neither diagnosed it as BFS—I did via this forum. I have tried everything I can think of to help eliminate, or at least reduce the twitching: Calcium, magnesium, vitamin D, vitamin B, vitamin E, cutting caffeine, cutting back on alcohol, quinine, quitting smoking (5-years and counting on that one), warm soaks, Natural Calm, multi vitamins, diet, exercise, and even a few prayers—which, from someone with little religious background is a complete act of desperation. The only thing that offers me some relief is clonazepam. While it doesn't stop the non-stop calf/feet twitching, it has on occasion (or just by coincidence) helped stop some annoying and troubling twitching. I don't know about anyone else, but anytime I develop a hot spot facially, my anxiety goes through the roof. Last October, I woke up out of town before a meeting and I had the most violent twitch right under my right eye. I could see it standing many feet back from the mirror. It went on for FOUR straight hours before I took .5 mg of clonazepam, which seemed to kill it. Same happened with a cheek twitch one evening. But, I digress…Right now I know this much to be true: I am not suffering from a deadly disease. After 7 years, that is about guaranteed. Still, I wonder often if this "BFS" could be a more global symptom of something. Something not yet identified by the medical field. Like I said earlier, I feel cheated often. It's frustrating not to have a more definitive dx that would help others understand. I have a wonderful partner who has stood with me, but he has had his fill of listening to me talk about it. I also desperately wish there was a plan of action that could help eliminate these annoyances. And, in a most perfect world, I want to know exactly what is going on in my body that is causing this, and what caused it to begin with. Sometimes I lie in bed thinking back to 2004 when this all started and trying to identify the culprit. Prior to their "launch,” I had suffered for a few months from (other) symptom anxiety (which has since long resolved itself) and was briefly started on Lexapro. The later I have often believed to have triggered this syndrome. Days after starting on it is when the first twitch appeared. I stopped taking it after a couple of weeks and the rest is history, except the fasciculations. Anyway, thanks for listening—or in this case reading—my ramblings. Reaching out into cyberspace offers me some solace, and also hopefully it offers some comfort to others who are early in this journey, full of that anxiety of wonder. You're fine, and will be fine. It's the anxiety that comes with this that is the most difficult to deal with. Best,Sean
) nature of our condition.Take care,Gary