Search results

Hey-- also a longtime twitcher hanging around here right now. Keep in mind that you have something weird going on with your muscles. You have a medical condition, whether or not it's clearly named or understood by medical professionals, that causes weird symptoms in your muscles. One of the...

Thank you! All the best to you as well.

Hey folks,I thought I'd check in since I used to post here a whole lot, and I finally got a diagnosis this past December. The doctors told me I have something called Post-Irradiation Motor Neuron Condition. I've also seen it called Post Radiation Motor Neuron Disease. I had cancer when I was 12...

Hey folks-- bumping this "check in" thread instead of creating a new one. Just wanted to pop in to say hi. My symptoms have continued to get worse-- this winter was the first time that I couldn't shovel. Living near Boston, that was tough this year. And obviously the twitches are still going off...

Ha, I'm psyched you guys got something out of that. It was kinda therapeutic to me as well, just summarizing everything that has taken a few years to sink in.

Since I'm here, maybe I can offer some advice to any newcomers, from an old-timer (weird calling myself an old timer when I'm only 30...I've been twitchin a while is what I'm saying.) This is all of the knowledge I've picked up in the past 5 1/2 years, and most of this (ok all) will be redundant...

Suzi!! Great to see you're still here. I hope you're doing well. Bummer about the no magical answers thing. I keep hoping I'll come back here someday, the place will be almost empty, and there will be a post about how it's been discovered that a small village in Ireland makes a type of whiskey...

Hey folks, Just wondering what's been going on here in the past few years. Have there been any stories of people getting to the bottom of their twitching? I remember there was one guy many years ago who found out he had calcium deposits pushing up against his spine, which were causing his...

Jesus, get a grip. After 3 years of no weakness, no atrophy and clean EMGs, what more do you want? You're completely misreading that abstract and are causing far more harm to your health with irrational amounts of fear and anxiety than any freaking twitches could ever do.

This was just posted by a particularly helpful member of the ALS boards:"Bart got his diagnosis of BFCS, even though he kept saying that he didn't have a firm diagnosis. It wasn't "firm" because for some odd reason, Bart couldn't and wouldn't accept it. He saw neuro's for nearly 2 years and...

I spoke with Bart quite a bit on the ALS boards. He was never diagnosed and he has never returned to let anyone know how he's doing.

Hey man--I have had an elevated C Reactive Protein two years ago, I believe it was right over 5 like yourself. None of my doctors seemed too concerned about it.

Add me to this list! I get them all the time, at least a few times a week. Sometimes they wake me up, sometimes I stay asleep while my body jerks around. My girlfriend gets a kick out of it. (Get it?? "Gets a kick out of it??" ugh...)

Lostboy--I don't understand why you listen to the bad stuff but not the good. You've had dozens of people say that you're fine and it sounds like you just have BFCS, but you grasp on to any tiny thing that could justify your fears. Imagine if it were the other way around: all the doctors and...

Lostboy--You need to get your anxiety under control. You need to accept that even if you have "more" than BFS, that doesn't mean it's ALS. You should know this by now. Your medical problems seem manageable, but your anxiety is out of control.

Hi Simon--That sounds incredibly similar to my muscles these days. I've had twitching and all sorts of nonsense for 3.5 years, and the exercise intolerance can be really trying sometimes. The muscle pain usually shows up a few hours after I exercise but the muscle pain is INTENSE and it lasts...

Hey Fiore--I believe I've spoken with you in the past; I also have thryoid issues (I take levoxyl everyday to replace my thyroid functions) but my thyroid "levels" are normal, so the docs don't think it's the cause. Even though it might provide some type of closure to have a diagnosis, having...

I've taken a thryoid replacement drug every day since I was about 15 (levoxyl) so count me in as one of the "well, maybe this thing is endocrine system-based" examples.

Absolutely. My ring finger and pinkie finger are almost always completely asleep/numb when I wake up. This means I can't move them or feel them, but they are usually fully functioning again within a minute.

Hey folks--- I hope everyone is doing well. I don't show up on these boards too much anymore, but I'm still kickin and still twitchin. Not really sure what I have, but at this point I'm pretty sure I'm worse than regular BFS, but much better than ALS. I'm guessing it's some neuropathy somewhere...