5 Year Update

BFS Online Support Group

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5 Year Update

Postby Strive on January 31st, 2019, 6:51 pm

When all this started, I didn't think I would be around to write a 5 year update, but here I am happy and healthy and so I thought I should post. I suspect quite a few people still use this site although you can no longer register, it really is great repository of twitching info so hopefully this post can add to that and reassure any new twitchers out there.

I started twitching in my late 20's, during a very stressful time in my life. Also about a week after a nasty flu. It started with one single spot on my forearm, which was amusing for the first couple hours but became concerning when it persisted. I showed it to a GP who wasn't impressed at all and told me not to worry about it. After 24 hours it went away and then the rest of my body exploded. Looking back, I think the first few months were the worst in terms of frequency. I was twitching somewhere, every few seconds. There were hot spots, but mostly the twitches were a couple here, then a couple there. I saw a neurologist about 2 months after all this started, which is very good for where I live (Canada). He did an EMG which didn't capture any of the twitches, and was otherwise normal. He did a complete exam and said my strength was normal throughout. He was in his 60's, and told me he started twitching in medical school and is still fine. He said my fasciculations were benign and would never turn into anything. He said I could make a follow-up appointment any time but from his point of view he didn't need to see my again unless I developed new symptoms, like objective weakness. He told me not to be surprised if my twitching came and went for decades and that wouldn't be a cause for concern. He seem to think BFS was fairly common and mentioned he had seen lots of it over the course of his career.

Fast forward 5 years, my twitching is definitely better than before. Hot spots have come and gone. Things definitely ramp up with stress and sleep deprivation. To be honest, I barely notice it any more unless I get a particularly bad hot spot in the face or hands. I've twitched pretty much everywhere, including several tongue hot spots over the years. Never had much in the way of sensory stuff or muscle cramps. I work out regularly, have a full-time job, have a family, and life is good. No disability whatsoever.

I think the key thing is to get to a place mentally where you accept you're ok, you stop self-testing your strength, stop staring at your tongue in the mirror, and just try to ignore it. It really took me 3 years to get to that place and it wasn't easy, despite the fact the neurologist told me I was fine very early on (I never did see a neurologist again). I also have a golden rule I remind myself of: There will always be another hot spot, but hot spots always pass (eventually).

Good luck to all the twitchers out there. You're going to be ok.
Strive
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