by stayingstrong on March 16th, 2017, 3:55 pm
Hello everyone,
It's been about 7 years since I've posted on this forum. I started having twitches in my pinky finger a few weeks ago, and legitimately started googling "onset symptoms of ALS." It brought me right back here to this place. I started twitching in 2007. Here we are, ten years later, and I'm still kicking! The initial symptoms and diagnosis period of BFS is something that can really take a great physical and mental toll on you. I don't think I've ever been in a darker place in my life, then when I was fully convinced I had ALS and would be dying within 5 years. People may laugh about it now, but during that time, it was the most terrifying thing I've been through to date. My twitches come and go. To be honest, they're just a part of my life now. I notice they get worse with certain activities...like drinking coffee or caffeine, alcohol consumption, certain teas, certain physical activities, etc. The difference now is, I expect them, and I don't let it ruin my life like I did years ago.
I am really sad to see that this community has sort of slowed down and new people aren't getting approved. The people on these boards helped me realize that I was going to be okay. There is no substitute for that. Even when my new annoying daily pinky twitches started, I came back here, just to reinforce to myself that this is completely normal. There are ups and downs, and good days and good years, and bad days and bad years with this Syndrome. I just wanted to post for all of the people reading and tell you that you're going to be okay. There are so many people on these boards that have had this disorder for way longer than me, and they are just fine. It's scary, it doesn't make much sense, and no one knows why the hell it happens, but you're not going to die. Frankly, once you settle down and accept that, all it is is an annoying part of your everyday life.
I just wanted to say thank you to the people still reading this. You have helped me keep my sanity and not lock myself inside thinking that I am on death's doorstep. You are all wonderful people, and I hope that you're happy and healthy and well.
xoxo,
SS