by joycecaroll on December 12th, 2014, 7:31 am
I just have to vent this. I know I'm very obsessive, but I just nead somewhere to write my thoughts knowing that maybe someone will answer. If someone feels I'm to obsessive, don't read it. I don't need to hear how obsessed I am, because I do know this.
I'm so scared I have bulbar onset ALS.
In july I had few tongue twitches one day. They went away after about 10 seconds, but it scared me so much. So I had an EMG done on my tongue late August, and it was clean. Couldn't stop thinking about it even though my EMG was clean.
In September the tongue twitches came back. Now they where daily. Maybe 5-6 a day, always single ones each time. It was horrible, and still is.
I'm scared I'm in the hyperexcitability phase, where the only symptom is fasciculations. This phase can last up to 8 months. I'm trying to find out if even in this phase, one would expect to have more fasciculations than tops 10 a day, but no one seems to know for sure.
But today I had a pretty good day. Felt confident after talking to someone about this subject, and it really helped. This plus the fact that I hadn't been getting any tongue twitches all day made me feel like wow, I've been scared about nothing all this time.
Then I came home and got the idea to look at my tongue with a flash light. Saw all kinds of twitches and got really scared. Then I got this BIG twitch in the back of my tongue that I could both see and feel. Then I noticed that if I put my tongue on my bottom lip and tried to relax, I had a persistent twitch a the tip. Now I'm so scared again. Don't know what to do at all.