ALS Support Community

Hey, brother. Ive had 2 emgs and they tell me it's cfs. I read your story, I think you have bfs. I'd look at reddits bfs forums. There are two, muscle twitch and bfs. You'll find me as cantcensormemane

Thanks for the recommendation, I'll check out the Reddit forums. I keep holding out hope that it's BFS, but each day with it being so constant I believe it less and less. Going on 45 days now since it started and only thing that stops it is Valium. Alcohol doesn't change it

Keep me updated. I'd be happy to share the information I have. I'm not exactly out of the woods either. The neuro at the als clinic informed me that it takes a year to actually rule out als. The other neuro didn't say that to me. His opinion was that I don't have it, period. Unfortunately, I have other symptoms and it's hard to say if it's gerd or not and so forth.

Sucks having a problem that science hasn’t caught up to yet. Like in 50 years it will probably be a quick blood test. I got lucky and got EMG moved to Wednesday so I’ll know something soon.

I noticed your post about the tripped and sliding the ground. Do you have clinical weakness in your foot? Actual foot drop? An easy way to test it is to keep your toes to you and press down on your foot. You should be able to resist it. Also, a motion like pressing the gas pedal-- should be able to force away a hand-- either way, I'd imagine your GP did this with you.

The reason why I ask is because with bfs and cfs, people, myself included often feel like our legs or feet are jelly. They aren’t it just feels like it. For example, I felt like my foot was dead-- then I checked it by single leg calf pressing 300lbs.

Yea I have cramping in my left foot which when doing what you said about pulling the toes back there is a ton of pain. But I’m still able to squat normal maintenance reps with 225lbs. It is weird you say that about walking because sometimes it feels like I’m bouncing while walking.

Part of me is relieved I have an EMG on Wednesday because it is said is you start with fasciculations and have als you will have a bad EMG. But originally it was 7 weeks out so I suppose I’m happier to have it now. My birthday is the day after my test so I think I’ll tell the doctor to call after my birthday in case it’s bad news. Thanks for the information, big relief having someone to talk to.