11 Year Anniversary

BFS Online Support Group

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11 Year Anniversary

Postby Rolon on March 18th, 2015, 10:43 am

Hey group. Just wanted to say, hang in there. I just passed my eleven year anniversary. This site was a Godsend in the early days. Like many that visit, I was certain I was in my final days on earth. I even planned my funeral. Seriously! My doctor thought I was nuts and was no help.

My nueor, who didn't know anything about BFS either, noticed I had a low homocystine level or something like that and prescribed a vitamin called "Folic Acid". I take one 800 mcg OTC tablet every day. Not sure if this is what helped my condition, but it definitely didn't make it worse. Give it try. Its just a vitamin.

The twitching and worrying about the twitching often times kept me up at night. I was averaging only 3 - 4 hours of sleep each night. I started using sleeping pills. That helped.

Anyhow, after eleven years, I am not 100 % completely free of twitching, but very close. When I do have twitches, it doesn't freak me out like it did that first year.

I hope and pray for the best to all of you that are afraid and suffering from symptoms. I was there once and I survived. So can you!
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Re: 11 Year Anniversary

Postby garym on March 18th, 2015, 2:22 pm

thanks for the update....stories like yours helps the members just starting on the journey.

Gary
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Re: 11 Year Anniversary

Postby Ghayes420 on March 18th, 2015, 2:41 pm

Thanks for taking time to come back and update us on your condition.

Did you have other symptoms beyond twitching or was your only complaint twitching and a few cramps?

Thanks again for updating everyone.
A very proud fasciculator since 8/14/2011. :)
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Re: 11 Year Anniversary

Postby Rolon on March 18th, 2015, 9:07 pm

I had it all. Started in my left arm, in about two weeks it migrated to my right arm, then to my back between the shoulder blades.... I used to get these heavy twitches deep in thigh in the middle of night that would wake me up.... I would get night sweats, numbing of arms while sleeping, which as you can imagine caused anxiety. The anxiety caused my heart to skip a beat all of the time, I had tingling in my feet, sensations like little droplets of water hitting my feet, and oh yeah, a feeling like worms squirming around in my foot. You should have seen the look on my Dr's face when I told him that one.... :shock:

When I had my EMG where stick the pins in you, my back was on a four day non-stop twitch and the lady conducting test says to me "...sir, will you please stop the twitching in your back or we wont get a good reading" and you know what i'm thinking ".. lady, if I could stop the twitching, I wouldn't be here". They were clueless!

I felt weak like I was not going to be able to walk very far. I almost cancelled a trip to the Bahammas that we've planning for a year because I was sure I wouldn't make it back home.

I was in a low dark place. Then I found this site. Thanks for the post Garym. You were there in my early days and glad to see that you are still here. And.... I'm still here too!
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Re: 11 Year Anniversary

Postby edado69 on April 18th, 2015, 8:08 am

Rolon wrote:Hey group. Just wanted to say, hang in there. I just passed my eleven year anniversary. This site was a Godsend in the early days. Like many that visit, I was certain I was in my final days on earth. I even planned my funeral. Seriously! My doctor thought I was nuts and was no help.

My nueor, who didn't know anything about BFS either, noticed I had a low homocystine level or something like that and prescribed a vitamin called "Folic Acid". I take one 800 mcg OTC tablet every day. Not sure if this is what helped my condition, but it definitely didn't make it worse. Give it try. Its just a vitamin.

The twitching and worrying about the twitching often times kept me up at night. I was averaging only 3 - 4 hours of sleep each night. I started using sleeping pills. That helped.

Anyhow, after eleven years, I am not 100 % completely free of twitching, but very close. When I do have twitches, it doesn't freak me out like it did that first year.

I hope and pray for the best to all of you that are afraid and suffering from symptoms. I was there once and I survived. So can you!


Great stuff! Thank you!!!
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: 11 Year Anniversary

Postby NeedAssurance on May 4th, 2015, 12:53 pm

Been twitching since 2006 here, nice to see another long term twitcher :D
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Re: 11 Year Anniversary

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