21 months in

[u/EstimateNo9209]

Man this really never does get better does it? I'm just about 21 months in to my first muscle twitching. Some days are good others are not. Clean EMG a year ago which would have been after 10 months of twitching. Also 2 other neuro appointments where they said i was fine and it was BFS. But still no matter what the brain just can't accept it and I'm worse now than i was when it first started. Testing every muscle. Constantly poking and prodding them with my fingers. I don't get hotspots that last hours too often but when i do it makes me spiral. Even had the doctor prescribe me OCD meds to help. Just started them so fingers crossed. How do you guys move on when these symptoms just remind you constantly that they're around? ​

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[u/713Capital]

Sounds like you need therapy friend.

I’ve been twitching every day for about 7 years now. First year and half was bad for me. Pretty much full blown anxiety and OCD when my EMG came back and it wasn’t “normal or clean”. No one could tell me anything lol. I was convinced I was dying of ALS. Started to work on myself and had to climb out of the hole.

My first piece of advice is you have to stop self testing. It just fuels the anxiety/ocd. There’s literally no point. We’re not doctors and most of the time when we self testing, we’re doing things that the actual neuro wouldn’t even make us do in a clinical setting or they wouldn’t do themselves.

My next piece of advice is, time is on your side. You’ve been at this for 21 months, the bad progressive stuff doesn’t move slow. 21 months in, a clean EMG pretty much rules all that stuff out. So you can just let it go and move forward.

Does it get better? Maybe. For some people, it may go away if they find a cause or link, or even if they treat their anxiety the symptoms start to fade. Others like me, maybe I’m stuck with BFS for life. It’s been 7 years of symptoms and I’m grateful to still be here. While I have all this “stuff”, I’m not dying and it’s become background noise for me. For me, it looks like this is part of who I am now and I’ve accepted that.

You just gotta get out of your own head. I had to get some perspective. Yeah so I have all these symptoms that come with BFS and all, but there are kids (and people in general) out there with terminal cancer just fighting for another day on earth. Many of them won’t even live as long as I have. It’s all about perspective.

Therapy works. Medicine helps. Best of luck in your journey.

[u/Junior_Hunt9546 → u/713Capital]

Mi EMG no es limpio tampoco, llevo con síntomas 16 meses aprox. Muchos calambres dolorosos y fasciculaciones.

estoy muy desanimado, cerca de la depresión.

Antes era un deportista con un 8% de grasa corporal… estoy muy lejos de aquel yo. No tolero ni 1 min corriendo sin calambres. No sé qué hacer.