Welcome Home! Twitching Since September 07

Hi Everyone,Thought I would pop by after a long absence from this site, which was a lifesaver when I needed it. I have been officially twitching (official with a doctor's visit) since September 07, although I think I really started twitching a couple of months before that. It started in my tongue. I thought it was just an odd body thing but when it started happening every night by the end of August I decided to google it. Well, you know how that goes. I was a bit freaked out to say the least but really didn't think more about it because nothing else was wrong. A few weeks later my right bicep started twitching for days and wouldn't stop. And after a week of that the twitching exploded all over my body, mostly in my legs, but everywhere. Calling my neurologist's office and explaining my symptoms to her assistant only heightened my anxiety because normally when I call (I'm a migraine sufferer) it takes three months to get in My call was returned within 5 minutes and I was asked to come in immediately. I was a basket case.Unfortunately, although she said she thought I had BFS, she said that she had to let me know that twitching was also an ALS symptom and that we would have to watch it, but that "for now" I was fine. From that day forward I was a basket case. Thinking about this, obsessing about twitches, being terrified to tell anyone because they'd think I was crazy, consumed my life. I became more reclusive, friends were worried and thought I had cancer because I was losing so much weight. Some confronted me and I still wouldn't talk. Couldn't sleep, couldn't eat, cried all the time. I realize now I was suffering from anxiety that I was contributing to worsening twitching symptoms. Even after doctors' reassurances (you are strong as an OX!) I couldn't let it go. Because the twitching was getting worse and I was starting to feel my muscles freeze up (felt like I couldn't move) they ordered an EMG. This was 6 months into the twitching. With the doctors' diagnoses, clean bloodwork, and a clean EMG, I realized it was one thing for me not to believe a human, but to not believe a blood test or the EMG did sort make me sound crazy. And that day I decided to put this behind me and it's the best decision I ever made.I did ask my doctor when this would go away. She said it probably never would. I still twitch like crazy. It's always there. I get frequent hotspots that are distracting. But I simply don't care. It does not rule my life anymore and I wish I had listened to people when I first joined this site who basically said exactly the same thing I've said above.I do feel your pain! I know what it's like to be consumed with worry about some odd body issue that makes you sound crazy even talking about it. No one can relate except another twitcher. But please, don't ruin your holidays like I did (and I pretty much ruined Christmas for my kids with all my crying). I'm lucky I had a very supportive spouse who just rolled his eyeballs every time I dropped and did 20 pushups. Yes, I did that about every 15 minutes. No wonder I lost 20 pounds. But when I made a mental note to file this away I did. This is a great site, but if you continue to read posts you will continue to worry. I watched a friend die from ALS (and no, these aren't sympathy twitches because I never knew she twitched - it was one sypmtom she never mentioned). When ALS happens, it happens fast. It's Fortunate that she never mentioned twitching and I didn't find out until after I came to the conclusion that I have an idiopathic condition and started telling friends what was wrong, which was a good thing. Had I known she twitched (and it wasn't anything like our all over twitching) I would have been committed for sure. Twitching was the least of her concerns and complaints - it was hardly noticeable to her. Her weakness was her first symptom and it spread rapidly and was overwhelming. There wasn't any question of whether she had weakness or not. She did not need to go to a website and ask what others thought. One day she could no longer lift a plate out of the dishwasher, the next she couldn't brush her hair - and she never could again. It doesn't come and go - ever. Even before she had a name for it, she knew something was terribly wrong.So please, be healthy, be happy. Don't let this consume you. Pay attention to the long-timers and their reassurances. We are correct. Will you stop twitching? There's always hope. But as my tell my husband, I prefer twitching to going bald like him. So look on the bright side! We are the lucky ones, so let's not waste a day wallowing in anxiety over what could happen and be productive by brightening someone else's day instead of poisoning our own. Have a great day! Ally

Class A inspirational post.Thanks for the words and keep up the good spirits.Mich

thanks for this post. it is a good one! jackagel (sp)-, what are your current symptoms? do you still see a neuro or have they "released" you? do you still have tongue twitches? what did they say about them?i get tongue twiches and so am interested because many people do not....thanks for taking the time to help us all.

Thank you for this post!!!Just what I need to hear.

Hi,To answer your question, I have been "released" from the doctor, so to speak. I had visited many doctors from a neuro, to an orthopedic, to a psychiatrist...not a single one is concerned any longer about ALS. And as I said in my post, my neurologist said the twitching will probably never stop. No one knows why it starts, and it's been her experience with twitchers that we don't stop. We may think we do as we relax and quit thinking about it, but we are still twitching.Yes, I still twitch every day. Add into that these strange jerky muscle movements I get, ALWAYS at night when I am trying to go to sleep. It's sort of like the myoclonic spasms (sp) that everyone feels from time to time, the falling through space thing just as you fall asleep, except mine happen when I'm awake. I've had my hands fly up in the air, my head snap back, my leg kick, my back arch, etc. And a lot of sharp shoulder movements. It's weird, and I'm leaving it at that. It's like my brain wants to go to sleep and my body is fighting it, so let them fight. It's related to the BFS and my main concern was that I would jerk while driving and run off the road with my kids. But just like twitching, if my muscles (and I guess my brain!) are in use, I don't twitch or jerk. I compare it to a circuit board doing a self-test.And yes, I get the occasional tongue twitch. I have to say those still freak me out a bit. But I would be the longest twitcher in history to have a dreaded disease crop up now. Other than the 20 pound weight loss which I sadly gained back, the only other good thing was the lesson I learned about panicking before having a good reason to panic. I'm trying to no longer sweat the small stuff, and twitching really is small stuff.Have a great evening everyone. Ally