7 Years now

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

7 Years now

Postby JayHutchins on December 21st, 2012, 12:21 pm

It's been about 7 years and although my fascics are similar, I have noticed them spreading. They started in my left calf, moved over to my right calf and then some into the thigh. Having had a father who died with MS and had friends who had ALS, I knew it wasn't any of them. So, I got the referral to go see a neurologist and BFS was the diagnosis. This was about 2 years ago.

A year ago, I noticed more of the fascics in my upper body and the feeling of having your body vibrate, even though nothing is vibrating. About 2 months ago, I got it in my right ear, mainly in the mornings (sounds like the soft rumble of a distant tractor trailer in low gear), and over the last week, have had it in my hand (between thumb and pointer) and under my right eye. So, it's not worse, just seems to be "spreading". You'd think with all the extra movements, that I'd burn more calories and be losing weight. Not so...

Regarding stress/anxiety/sleep/diet as a way to help: I am not worried, but I do think about it often, especially when a new one pops up. Other than what life can throw at you, I'm pretty relaxed. I don't sleep as much as I use to as a herniated disc in my back and carpal tunnel keep me up (working on solving those problems). I eat organic and healthy when I can. We grow some of our food and have chickens for eggs. So, I'm out of ideas on ways to limit them or keep it from spreading more.

Actually, I'm not sure why I'm posting. I have been reading posts on and off on this site for about a year now. Guess I just wanted to share what I am going through in case someone can relate. And I keep reading in case someone comes up with a way to solve or minimize the fascics. I wish that, even though it's not deadly, a doctor somewhere would research it more and more until a reason could be determined. Seems that would put a lot of people more at ease with it.
JayHutchins
New Member
New Member
 
Posts: 2
Joined: December 20th, 2012, 3:04 pm

Re: 7 Years now

Postby aztwitchy on December 21st, 2012, 1:42 pm

hey jay...sorry to hear you are going through this. where is your herniated disc?
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
aztwitchy
Hero
Hero
 
Posts: 451
Joined: December 3rd, 2012, 5:18 pm

Re: 7 Years now

Postby TwitchyDoc on December 22nd, 2012, 5:52 pm

Similar to my story, except that I am in my 6th year.

As for the research - well, I got the top notch ALS expert with his team to study BFS and just 3-4 people from this community participated...not really what I expected, especially if we do not think selfishly. But hey, we still will be just additional data source to their real patients, so I am not that disappointed ;)
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: 7 Years now

Postby JayHutchins on January 29th, 2013, 9:18 am

My disc problem in my back has been 75% resolved thanks to a kind gift from my wife. She bought me an inversion table and even though I used it only for about 15 - 20 seconds the first time (because all of the blood flow to your head) I stood up and had zero pain. I can last a lot longer on it now and it has been an amazing tool in making me feel better.

The fascics are the same, my hand and eye ones have gone away, but all of the others remain. I have been told (and self diagnosed) that I do worry about little things too much. I get uptight easily, but BFS is not one of the things that gets me this way. As you can tell, I'm not on this site everyday, and that's because I'm comfortable in the body I have and, other than being about 20 lbs. overweight and not in the best shape, I'm happy with the condition my body is in. Maybe one day, there will be some sort of breakthrough that can help eliminate the fascics and we can all live a life of stillness and peace. But for now, just rolling with it.
JayHutchins
New Member
New Member
 
Posts: 2
Joined: December 20th, 2012, 3:04 pm

Re: 7 Years now

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 2 guests