Did you do this in the beginnning?

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Did you do this in the beginnning?

Postby plainslady on February 16th, 2012, 1:53 pm

Hey everyone! I've been writing about my BFS experience and realized something interesting about the start of this mess. I remember that in the beginning the only twitch I had was in my calf, occasionally my foot on the right side. This led me to the internet which in turn led me to Dr. Google. Withing a few hours the twitching spread to my other leg, my arms and my abs and back.

A couple of days later I read about bulbar onset ALS and that's when the twitching began moving north towards my face. One night laying in bed at a hotel I recall hoping, praying, that the twitches wouldn't move to my face and tongue. As my anxiety built I was almost crying, dreading that first twitch in my face. And that's when it happened. I felt a twitch in my left cheek and they spread like wildfire that night.

The next day I was in the pool with my kids, twitching from face to toes, but relieved it wasn't in my tongue. Then when we got out for lunch I was eating and bit my tongue. This made my mind jump to the bulbar symptoms and I kid you not, just a few seconds later I got my first tongue twitch. This carried on for days, scalp to feet, never a moment I wasn't twitching, popping, or buzzing somewhere. Many times I would have them going off in different areas simultaneously every second. That was back when I had thousands and thousands a day.

Once I started intensive therapy and my medication took effect, they reduced from thousands to hundreds. As my fear of ALS being a disease of twitching waned, so did my twitches.

Now I'm to a point where I never have them in my tongue, only occasionally will I have one in my face or neck, and only while under stress or anxiety. They have slowed immensely in my arms and only once in a blue moon do I have them in my abs or back. They have slowly subsided back to the point of origination; my right calf and foot. They are not continuous by any means and I perhaps have 100 per day.

I am confident there are many causes of BFS, from neurological, immunological, to pure psychological (which I believe my experience has been.) To clarify, I believe the original twitches in my calf and foot are physical, from pinched nerve roots in my back. I believe it was purely hysteria that led to the spread of them all over my body. I would dwell and ponder each and every area that wasn't twitching until it started there, then I would move on to the next until there was nowhere left untouched. As my fear and extreme anxiety died down, so did the symptoms. Once I realized the TRUE characteristics of bulbar onset ALS, my tongue twitches stopped immediately. It followed this pattern until I'm left where I am now, the way I was in the beginning.

Are there any of you that recognize this progression of BFS and can relate?

~Frances
“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one”
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Re: Did you do this in the beginnning?

Postby MissBehavin on February 16th, 2012, 5:19 pm

Yes, this is how mine went too. First my foot, in the arch and calf. Ignored it for a few days-no biggie. Then I googled it.....WHAM, within a few days it was all over. As my anxiety died down so did the twitches, right back to my foot and calf. I can't tell you how many I have now because I ignore them. I can tell you some days are better than others. I do still get the occasional twitch somewhere else. The last several months my issues are more from the tingles.

I now have 0 worries about ALS. Life for me is just learning to live with my new body. It's not so bad, it could be a hell of a lot worse!
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Re: Did you do this in the beginnning?

Postby BobDownSouth on February 17th, 2012, 1:00 pm

My first twitch was in one of my calves. They got more intense in both legs over the next two months. Before two months had been reached, I was twiching in my arms as well. I'm now into month eight of this club. My major hot spots are still in my calves. On the whole, the twitching bothers me less. My worst problem is fatigue in lifting arms, some days more than others. I now have more stiffness in joints in hands, feet, arms and legs, again better on some days than others.
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Re: Did you do this in the beginnning?

Postby Simonaa on February 17th, 2012, 2:14 pm

My first twitch begun in my left Eylid!
It was weeks and months!!
I ask Dr. Google: Wahhhh read about ALS and 2-3 Hours later the twitches ALL OVER MY BODY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!wahhhhhhh! :)
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Re: Did you do this in the beginnning?

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