I am so scared...

Information about how to manage or reduce the severity of BFS symptoms

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I am so scared...

Postby Mimmi on April 8th, 2003, 8:04 am


I was SOOOO happy to get your message!! I feel so lonely and my family and friends are getting nuts on me. They try to talk with me and convice me of the fact that my symptoms are not dangerous, but the whole situation makes my life a cathastrophy.

I am 32 years old and I have been twitching since August last year. One day it all started and the twitches spread all over my body. Everyday, almost all the time. Sometimes many at the same place, sometimes just a few, sometimes hard and sometimes more soft. I had an EMG done in the beginning of the autumn last year and they could find fasciculations in my muscles, not only in muscles where you can see and feel the fasciculations, but also deeper down inside muscles, more deep in my body. But they did not find any other "things" like denervation symptoms of nervs and so on - so "just" fasciculations....how to cope with that?!

One of the most scaring things is when I get some sort of deep twitches - deep down in my throat. It is not hiccup. Some strange twitches that are more deeper down and rhythmic. Often many twitches after eachother, but sometimes just one or two. I often wake up with this in the mornings....Great start of a new day.... :cry:

This weekend I was having a cup of coffee and I looked down at my right hand. I did not feel anything, but I noticed small twitches on one spot on the upper side of the hand. Since then I am twitching there - yes, it is three days now and the twitches do not seem to go away. I am getting crazy!! It is scaring since I do not feel them, but I can see them. I start to think that maybe this is because there is some damage of the muscle already and so on and so on.... and that is why I do not feel them.

Most of the twitches I can feel. They feel very diffentely as I mentioned above. Maybe I have fasciculations somewhere else, except on my hand, that I can not feel. I do not know since it is impossible to go through and examine the whole body all the time.

I am a single mother of a wonderful daughter. She will turn 8 this summer. I have a new boyfriend since one year ago and I am actually a woman that loves to live!!! But - this situation has totally made my life terrible. I can not work because of anxiety (right now just some hours a day....if I get up from bed...), I do not want to eat beacause I do not feel hungry, I am not a good mother or girlfriend. My whole situation is totally focused on this fear of having ALS and I do not know what to do!!

I am so happy that I have found this site and I will read as much as possible from the old letters here. I also hope to get some new friends here and that we together can try to help eachother! IWe all know what it is to have this scary symptoms and all the anxiety that comes with it!! It is a vicious circle and I do not know how to keep going. I am so afraid!!!

I have many other things to tell you all about, symptoms and so on. This is just a start.

Hugs / Mimmi
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Joined: April 8th, 2003, 4:41 am
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Postby izzie on April 11th, 2003, 10:40 am

Dear Mimmi,
I read your post and I know how you feel. I was just like you in January when my twitching was very bad. I stopped eating and couldnt sleep. I felt I was becoming a bad mother. I found it helpful to read the stuff on this site and I am seeing a therapist to help with the fear. You may find it helpful to talk to a professional. Try not to worry there are lots of us in the same boat and BFS is not life threatening , it is just an annoying condition. Try not to focus on it and go out and enjoy your self
good luck
Posts: 17
Joined: February 16th, 2003, 3:16 am
Location: uk




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