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5 F&%^$ing year anniversary

PostPosted: August 14th, 2016, 10:42 pm
by Ghayes420
Howdy Folks! Long time, no talk. That is a good thing!

Just your normal, regular white collar dude who has been a regular fasciculator now for 5 years as of today, August 14th, 2016.

I don't mean to act like some *beep* [email protected], but I will. I have seen more experts in our country than most people will visit in a lifetime. Mayo Clinic twice, UCSF, Forbes Norris, Washington University, Leanne's house including basement, ect. A long list of expert neurologists I have consulted. Nearly every medical article published on the issue I have painstakingly read and digested. Not the path I recommend, but the road I took non-the-less.

I have daily random fasciculations throughout my body all through the day. They increase and decrease in intensity but never a day without a fun reminder. The good news is that someday you will just either roll your eyes or shake your head instead of worry!

I received a diagnosis after 3.5 years of having BFS with something called Small Fiber Neuropathy. After $4000 worth of blood work, they could not find a cause, as they can't in 50% of the cases, therefore referred as 'idiopathic'. Small Fiber Neuropathy was confirmed via a skin biopsy as well as a QSART test. I know a few others on this site have had this dx as well. I have had numerous EMG's that have found fasciculations in the upper and lower body muscles both. I even had a fibrillation on an EMG, I think I get an award here for that or a bronze medal at least.

Facts to digest:

1.) BFS is a real diagnosis. Basically means: yes, you twitch all over and we don't know why. We do know that we have seen this numerous times before and you are not going to die anytime soon. Try and forget about it.
2.) BFS and BFS-like symptoms have numerous causes and reasons that they begin. Finding that cause is sometimes possible but more often than not, just a waste of your time and resources.
3.) As many have suggested before me, it is best to stay off of this site, and others sites and try and separate yourself from your condition. The less you concentrate on it, the less you will notice it. I understand, as my twitching started one day and then exploded and hasn't stopped for a day in five years.
4.) If you have only calf twitching and you have read this far, for the love of God, please get mental help. Seriously, wtf are you even doing here?


I want to give a big shout to all the folks on this site that have helped. Matt, thank you for introducing me and hope you are well bud. Leanne, thank you for being there always no matter what and listening. I don't know how you can do it. . Chrissi, my German friend, thank you so very much for all you have done for me. Johnny, Bill, should have listened to you guys from the start. GaryM, my football buddy, Bless you my friend, you have been a rock at times. Many, many more I have forgot to mention.

A big "F*&K Y#U" to JohnV, the lazy basturd couldn't get off his lazy azz to renew this site but oh well. Just an archive now.

Thanks for listening folks and hope you are all doing well. See you in another five years!

Re: 5 F&%^$ing year anniversary

PostPosted: August 15th, 2016, 3:07 pm
by garym
good to hear from you Greg.....great post!

Re: 5 F&%^$ing year anniversary

PostPosted: August 15th, 2016, 3:08 pm
by Yuliasir
Hi good to see ya!

Re: 5 F&%^$ing year anniversary

PostPosted: August 21st, 2016, 6:53 pm
by leaflea
Thanks for checking in! Really liked your #4 point!

Re: 5 F&%^$ing year anniversary

PostPosted: August 29th, 2016, 9:16 pm
by johnnythejet
Congrats on the 5 years bro. Lets hit up Portland sometime and you can show me how well you do cartwheels again.