Newbie: 2 Years of Twitchy Troubles

KarenKatherine

New member
I am a new poster, but have been reading the forum for about two years. I have had twitches for over two years now, different places, and other symptoms many here have. I try to reason with myself, but often find that I spin out of control doing strength tests, scheduling doctors appointments, and just obsessing. My twitches started with my eye, spread to me cheek, and then my right hand. No longer have real issues with my eyelid or my cheek, and my hand twitches are usually the warning sign that I am about to get blasted. With my hand it is usually muscles twitching that will pull my pinky, ring, and pointer finger side to side. I can watch the muscle beside my thumb thump away. After this it is usually my legs below the knee, sometimes both, sometimes only one. I had stiffness in my legs as well, which completely panicked me. I do not notice the twitches in my legs unless I am sitting still or in bed. They are not huge thumpers, and sometimes feel like worms crawling. Recently my left thigh has been very tight, almost like a band is around it. Was like it for a week or two, went away for a week, now is back but intermittent. I can stand on my toes, walk on my heels, stand on one leg, and hold my hands up. That being said, anytime I scuff my foot, have a little trouble with a button, I just obsess. The fact that the twitches and tightness comes and goes also freaks me out, maybe two or three months on and two or three off, sometimes more, sometimes less.I have been to the neurologist and had an EMG about two years ago. He said it was fine except for some stuff with my neck and assured me I did not have ALS or anything else. He was pretty good and could see that I was a mess and set up an MRI of my head to make sure all was well, and it was. I did have more problems late last year and he sent me for a neck MRI, once more because I think he was trying to calm me down. It showed 5 pinched nerves in my neck, but compared to what my mind was thinking, it was great news. My neurologist has told me I do not have ALS or MS. I just started with a new GP who is great. I told him about my problems and he immediately asked if I had been to a neurologist. I said yes, and that I had an EMG. He said good because the twitches and cramps could indicate ALS. Of course that set me off too. He did have me take 600mg ibuprofen, which helped with the cramps and stiffness. I just can't reason with myself.I just want to hear from those living with this. Do I need another EMG? Do my symptoms sound like BFS (I think they do, but could easily talk myself out of it)? Is there anything I should do or not do? Any advice would be greatly appreciated! The forum has calmed me down in the middle of the night many times, and I thank all of you for sharing your experiences.
 
I see nothing consenting with your comments After two years you have nothing to worrying about I do the same thing I take one comment from my Nero and obsess about it for days and analyze it The key to this is reducing stress an anxiety as you know If you think you need another emg search good cop bad cop and read that post it will put things into perspective Or as my dr said " you twitch it's not going to hurt you, and I know it's hard but it's twitching and honestly nobody cares" Harsh but true Hang in there we all no how hard this can be
 
Thank you! Good Cop Bad Cop is a great post. It is tough because instead of doctors saying it is real and there is nothing that can be done, I feel like they are blowing it off, like I am not explaining it correctly, or they are missing the problem. The simple "it is benign" explination does not work for the type of person I am. Not only do I feel bad, but it often makes me wonder if I am crazy, if I am making it up and doing all this to myself (This makes me feel even worse). Then there is the on and off periods where I wonder if this is the same as last time, or is this something different. Of course every time there is something that goes away and something new that shows up, which I am sure is the presentation of something much worse.The worst part is that it all drags me down both mentally and physically and it ultimately takes time away from my wonderful wife and incredible twin boys. That is what hurts the worst. Trying to change how I react, but as everyone here knows, it sure is tough.
 
I know exactly what you mean. You're not going mad and it's hard to explain to people who have not experienced this. The neuro that I am seeing is going to put me in touch with a psychiatrist who deals with people who have als and those who think they do. He was so kind and said that he sees lots of people like me who twitch and cramp who are terrified they have this awful disease. He is the only person who has not made me think I'm mad (in the real world that is).I was trying to explain the other day to a good friend about why twitching gets me down and she looked completely puzzled! Thank goodness for this forum, it's been a lifeline.
 
I totally hear you guys I tell my friends and they are like "what do you mean you twitch thousands of times per day for 4 months" I still have my bad moments Just today I was playing soccer and tore my knee and as I was sitting there my legs were going off hundreds of times a minute. I actually started hitting my leg yelling "*beep* off already stop it give me a break" I know you've been through a lot and of people can't get over te fear the recomened seeing a physciastrs But honestly I don't think you need one So no you guys aren't crazy we all have our bad moments I certainly do
 

Users who are viewing this thread

Back
Top