Almost 2 years since last post - 5 years with BFS

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Almost 2 years since last post - 5 years with BFS

Postby bama on August 21st, 2016, 7:07 am

Like some others, thought I would share an update to my experience. I think it's been right at 5 years since I first noticed the twitches. 5 years... so many doctors... so many test... so much anxiety... but still nothing BAD. I almost have myself completely convinced it won't ever reach that point. The twitching is always here in some part of my body or another... sometimes weak, sometimes (like last couple days) very strong. I don't think there is anywhere over the last 5 years that hasn't twitched. At varying times I also have other "symptoms" to go along with it. I had seen posts about this before and I know there is no definite connection, but last couple days, can hardly stand for clothing to touch certain areas of my skin. This hasn't happened very often, but usually once or twice a year..with exception of my upper left leg which is pretty constant like this. Twitching was super strong last few days before this started.. so.... I've read of others with BFS and some with fibromyalgia that experience this.. so maybe related.. who knows. All nerve related I'm sure. Even in the midst of all my current twitching and pain, I ran 3 miles yesterday morning. Just wanted to share this for anyone else that may be feeling similar things.

All this to say, if you are new here, or still searching for answers... there are so many of us that have been on the same journey, experiencing so many different weird symptoms and sensations...none of which have led to an ALS diagnosis. From time to time we have all 'perceived' weakness, especially at the beginning, that wasn't actually there. If you suffer from any amount of anxiety, it will always be difficult to get the worst case scenario out of your head. We all understand it's in the back of your mind. Talk to your doctor, see a neuro, have 3 nerve studies done like I did, but don't spend hours and hours studying YOUR ALS symptoms like a lot of us have done. Don't waste time away from your family. If you are here on this board, it's because you are searching for answers and no one can give those to you better than your doc. At this point you have probably spent countless hours convincing yourself you have something that you don't... we've all been there. It's sometimes difficult to call the dr because you are afraid of them telling you it's something terrible. Honestly, if you suffer from anxiety, best thing you can do is not put it off, go get checked out right away so that at least some part of you feels like it's ok. Get a clean diagnosis, get up off the couch, eat right, exercise, pay attention to what triggers it (stress definitely does mine) and enjoy life. Already said this, but this thing will consume you, it will consume your life, it will consume your family. Don't let it.
bama
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Almost 2 years since last post - 5 years with BFS

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