About This Blog

Welcome to my blog, Living with Benign Fasciculation Syndrome. You're here because you're madly searching the internet trying to find answers for the severe frustration, angst and fear you're experiencing. I've been there: madly searching the internet. Sometimes I still go there. Right now I'm giving you a HUGE virtual hug and telling you that you're not alone and you are ok. I mean it. You're ok.

It's strange that something so alarming that happens to so many of us has no explanation. I say so many of us because, even though I don't know anyone else in my life who has it or has had it, I have found many people in and on the internet and in Facebook groups who do. We are not alone, even though it feels like it.

Speaking of Facebook groups, you may find some comradery there. There's BFS Recovery that has 4.7k members! And there's Benign Fasciculation Syndrome that has 3k members. I've found those groups to be more anxiety producing for me personally so I go through stages of following and not following, but you may find it helpful.

I do recommend subscribing to BFS and Anxiety Support on YouTube. I love this guy. He makes me feel better every time I watch one of his videos. Because here's the big key: do things that make you feel better about your condition, not worse. Stop googling symptoms for ALS or MS. If you've seen a doctor/neurologist and they've told you that you don't have those two things, it's time to move on for your own sanity and eventual peace. Peace?!?! Yes, peace. It's out there. You just have to start walking the path towards it.

I've been suffering from BFS for two years. The first year was absolute hell. I saw every doctor, three neurologists, an acupuncturist and a psychiatrist. I had thoughts of suicide. I thought there had to be an answer for what I was experiencing that didn't lead back to the most obvious one: anxiety. There had to be a cure out there! I even had an MRI that found numerous white lesions on my brain but after several follow up MRI's, the spots have not progressed so MS was ruled out for now (phew!) and the spots weren't the answer for why my muscles won't stop twitching.

In this blog I plan to go over everything I've learned over the last two years - I've learned so much! Some things have actually worked to ease the twitching, and some things were abysmal failures. I'm still on the journey but I hope you'll join me and we can support each other through this blog by sharing our experiences. 

Thanks for joining me.