am I o.k

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am I o.k

Postby paranoid on September 7th, 2002, 3:24 pm

HI I started twitching in mid June, first my calves, then by aug 1st the twitching was everywhere even my tongue. found this site before it went down and it relaxed me a bit as my symptoms sounded like BFS. however iI am worried again. my right hands feels weak I still have the same strength when I squeeze something but it just doesnt feel "right" This has been pretty consistent since Aug 1st and doesnt appear any worse yet. I have a neurologist appt in Oct but the fear of the unknown is killing me. Do you think I have BFS or early stages of ALS? [/b]
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HELP

Postby SCOTT on September 7th, 2002, 4:03 pm

I DONT KNOW ALL THE ANSWERS BUT HAVE LEARNED ALOT ABOUT ALS
ALS IS PROGRESSIVE AND RELENTLESS.
BY THE TIME YOU HAVE FASCICULATIONS WITH ALS YOU WOULD BE VERY WEAK. ASK FOR ARRON TO WRITE TO YOU HE IS VERY GOOD AT REASSURRENCE AND THE BEST TO TALK TO ABOUT BFS
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Postby Arron on September 8th, 2002, 10:36 pm

paranoid, relax, what you describe is common with BFS and that is EXACTLY the kind of "perceived" weakness people confuse with "clinical" weakness. Percieved weakness is more of a fatigue thing and fatigue can settle in any limb or muscle or your whole body. It can last a few hours, a few days, a few weeks or even months. That is what scares so many people with BFS (or fibromyalgia which you may have instead of BFS but that too is benign) into thinking they have something worse and that they are getting weak with ALS and that isn't the kind of weakness that is associated with ALS. Read the other posts in this web site and you'll learn and start to relax. See that neuro when the appointment comes-up so you can rest your mind. ALDS twitches do not start like that and then spread all over like that. They do spread but with a uniformity to them and they progress, what you describe is random twitches all over and that is not like ALS at all. It is also VERY common for BFS to show-up and stay in the calves, just like what you have. It is also NOT like ALS to start in the calves :-)
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Postby Guest on September 9th, 2002, 7:49 am

Thanks Arron,
I logically try to tell myself I am o.k. but reassurances like yours make it a little easier. It is hard to wait for the neurologist appt. would it be correct to assume that if I felt weakness in my hand at the beginning of Aug it would have gotten worse by now if I had A.L.S. ? As you know it is very debilitating to worry. I have spent the last 3 months in a complete daze which leaves me less to give to my family. It is hard to concentrate.
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Postby Jake_the_twitch on September 9th, 2002, 3:45 pm

Dear Guest:

As Arron has already mentioned all of us have gone through what you are. After a year of twitching I still percieve my strength as weak but I can still run, play hockey, pick up my children, open jars when my wife can't etc. You say you still have the same strength but feel weak. ALS would cause you to say I feel the same but I have no strength, I can't open jars, turn the key etc.

As for the fear ruining your life, I lost a good year to this BS don't let it happen to you. Enjoy your life and your family now regardless of what the future brings. When your kids want you to play and you are thinking I am too tired or weak, kick yourself in the behind and think "I could get hit by a bus tomorrow so I can either play one more time with my kids and see their happy faces or I sit here miserably about something that will probably never happen." This change in attitude is what got me back into action after many months of fear.

I still twitch, I still fear, but I am functioning and someday soon I will be back to living.
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Postby Arron on September 10th, 2002, 10:54 am

Jake the twitch said it right! And, yes, most certainly you would have more weakness by now. That's what the word "progressive" means when ALS is in question. It doesn't show up, then stop, the decide to come back. It starts, continues and relentlessly progresses until you have no use of that hand, foot, limb and so on. Go play with your kids or whatever you want to do, but quit worrying... it ain't worth it! Trust Jake, myself and MANY other's who say to stop worrying and get on with your life... we've been there, done that and it SUCKS! Trust us on that one.
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