Newbie Here - Thankful For This Board

[etsKrakenbone]

I'm a newbie here... been lurcking around for a few months and finally decided join.First of all, I've got to say that this is a wonderful board. A true godsend.I don't know if I have BFS... haven't been diagnosed with it... haven't been diagnosed with anything... three doctors, an EMG, MRI, and spinal tap later - nothing. And I'm grateful. But I am still twitching, some days more than others.Anyway, I was hoping that someone might know if a clean EMG result would still rule out ALS - even if it was performed a few weeks before there is any twitching? I initally went to see the nerologist because of parathesias, fatigue, and aching muscles and joints. The twitching started a few weeks after my EMG. This all happened back in June... four months later I still have aching muscles, buzzing sensations, parathesias, fatigue and twitching (all of which continues to come and go).Thanks to this board I am almost over my fear of ALS... this minor timing issue with my EMG is the only thing that keeps nagging me in the back of my mind.Thanks.

 

[Krackersones]

I would like a definite answer on this issue too but I don't think there is one. From reading posts on this board on the issue, I think the general takeaway is that there is a very high (I'd guess 95%) chance that an EMG would pick up a problem as soon as you had any symptoms (twitching or otherwise) or even before then. That leaves a small chance that it would take longer. I would guess after a year it's 99.9%. These numbers are just based on the fact that some posters said their neuros wanted to do followups at a year and the fact that many other posters' neuros gave statements of "based on this EMG, you don't have **S" regardless of how soon the EMG was done following the symptoms. Because early detection doesn't lead to better treatment etc., I don't think there are definitive studies on this issue. Rather it is something that neuros get a sense of from experience treating patients and doing EMGs and this info gets passed along from neuro to neuro over many years. If I'm way off base, please let me know. I had my first EMG about 5 weeks after twitching and the second about three months after twitching. The second one was not ordered because more time had passed but rather because my new neuro wanted the test done by someone he knew was good at it before he relied on it. Krackersones

 

[etsKrakenbone]

Thanks for the reply Krackersones.I was hoping that I'd get a more definitive answer from someone - one that said "you have nothing to worry about". I agree with what you are saying, Krackersones. I just wish that there was a definitive answer.Juck

 

[Krackersones]

No one wants a definitive answer more than me. It helps me to realize that even in areas where people are more willing to give definitive answers the certainty is really not 100% in those matters either. People want 100% but that does not really exist in most situations but doctors give it to make the patients happy. It is human nature to want this. Krackersones

 

[RainCat]

How can there be a definative answer? You may have twitched for months or years have an emg everything is OK....12 months later you may develop MND ...NOT because you have been twitching for X amount of time but because the % chance that you get MND. While ever we are alive there is always that chance.... thats a fact that wont go away. You get a clean EMG move on and start living and dealing with this condition the best you can is what i say.