Twitching for 12 Months: Fear & Uncertainty

[Natalie2.Natalie3]

I have been twitching for twelve months. It's been the worst year of my life. You know the story...written my will and yes somewhere the thought still lurks that I am checking out and that I do have ALS.I have had five EMG's whilst some change is seen no deneravation as yet. However, my fear is quite simple. My first twitch started in my right arm. Initially I had them fairly infrequently and now twelve months on they are very fine and they are almost continuous hence my last EMG at the begininning of November. My twitching often happens in a muscle that is not relaxed. Can any seasoned twitchers say that there their twitching is sometimes in a muscle that is not relaxed? Secondly, despite having read "BFS in a nutshell" are there any seasoned twitchers who have very fine ones and are not visible that are almost continuous. Surely if this was ALS it would have been picked up by now on the EMG? The neuro I am under has asked me to focus on running a marathon I am too exhausted to make the stairs at home. This has all just been life altering forgotten what life was like before the first twitch. Help please..

 

[BobJazzy]

Can any seasoned twitchers say that there their twitching is sometimes in a muscle that is not relaxed? CheckAre there any seasoned twitchers who have very fine ones and are not visible that are almost continuous? CheckAbsolutely, just read some of my past posts. -Matt

 

[yanyytypeyofyuserna]

If you've been twitching for twelve months and your clinical exams and diagnostic tests show no sign of motor neuron disease, I'd say that you have BFS... nothing more nothing less. I know that at times, all the medical reassurance in the world can't subdue the fears and doubts that go along with this condition! If there's one thing that I've really learned about BFS, it is that the anxiety that is caused by this condition can end-up ruining one's life and happiness. With each EMG, your doctors have held their opinion that you do not have motor neuron disease. If you did have ALS (especially if it were the cause of your now 12 month old twitches) rest assured that it would be very evident in the results of your EMG. It would also most assuredly be evident in your physical condition. That is to say that by now you'd be dragging a foot, or unable to use one of your hands or arms, or you'd be having real issues with speech, etc.Also, examining and scrutinizing your twitching muscles is probably a bad idea. It falls under the category of self-diagnosis. You'll only make yourself crazier with this practice. I wish I had a nickel for every minute I've wasted watching my tongue in the mirror, or measuring the circumference of my calfs looking for evidence of atrophy. If I did, I'd have enough money to throw myself a party..... or to make the co-pay on another visit to my neurologist.In any event.... hope this helps. We all rely on others for a little perspective. That's why we're on this board. Like Winston Churchill said, "if you're going through hell, keep going!"Good luck! John

 

[smithylab]

Good advice like always John!Like John said, you should really feel confident in all of the many tests you have had. If something was off, I'm sure it would have been spotted during your first clinical exam, then emg. If for some odd reason(unlikely) it wasn't, then for sure the second..third..fourth, you get the picture,they would have found something. I don't think there is any way something could have been missed all of those times. I'm only 6 months in, but my symptoms have also changed since this all began. I've read many posts by people describing how they got worse with time, better with time, or have had symptom flare ups. I don't think BFS is predictable, it's just an annoying and scary ride we all want to get off of.Hope you feel better soon,Jay

 

[Natalie2.Natalie3]

Thank you for your reassurance. I have to be reassured by the fact that my neurologist specialises in neuro mascular and I have to trust his judgement. Still a horrific journey for us all. Got to try get back to normal living. )

 

[ShannyB63]

Check on both of these two as well..nothing to fear my friend it's all Bfs... )

 

[Natalie2.Natalie3]

Thank you Ghayes and Shanny for your kind words of reassurance. Seem to be at an all time low with this condition. You have no idea how reassuring your words are. I so appreciate it. )