Howdy All...

Information about how to manage or reduce the severity of BFS symptoms

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Howdy All...

Postby angusglover on July 31st, 2012, 11:39 am

Been a long time since I was on here, how is everyone? Hope everyone is doing ok...

Just as an update, I have made no progress whatsoever and seem to be getting worse. Now I am so fatigued, my muscles hurt after very little excercise and I have very strong aches from head to toe 24x7. I still twitch a lot.

I did however discover that I have Gilberts Syndrome, which is a liver issue to do with bilirubin being too high. The doc says I should not have all these issues..."no sh*t Sherlock"...

So, no progress!!! Sadly!!! :cry:
"If you can read this, thank a teacher....and since it's in English, thank a soldier"
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Re: Howdy All...

Postby lcanela on August 1st, 2012, 2:02 am

I have got it as well!

I still remember some time ago someone told me this fasciculations were related to the liver...
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Re: Howdy All...

Postby angusglover on August 1st, 2012, 1:59 pm

lcanela wrote:I have got it as well!

I still remember some time ago someone told me this fasciculations were related to the liver...


Yeah, do you have the terrible aches?
"If you can read this, thank a teacher....and since it's in English, thank a soldier"
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Re: Howdy All...

Postby marconi on August 8th, 2012, 6:45 pm

One more with high levels of bilirubin and fatty liver, what was very unexpected, because I have low cholesterol and live healthy life.

Best regards!
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Re: Howdy All...

Postby dux on August 8th, 2012, 11:41 pm

Very interesting. I also was told back in 2005 by my neurologist I have Gilbert Syndrome as well. I also have geographic tongue , I read many people have also.
I think I must have all the unexplained 'benign' stuff.
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Re: Howdy All...

Postby Shanny63 on August 9th, 2012, 4:27 am

I also have gilberts syndrome too...I think there's a few people with. Bfs here that do..
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Re: Howdy All...

Postby jerry2 on August 9th, 2012, 6:04 am

I don't know if I have Gilbert syndrome, but I have too high bilirubin all my life. And I have geographic tongue that as opposed to what books say, get me a burning pain when I have a new red spot on my tongue :-(
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Re: Howdy All...

Postby dux on August 9th, 2012, 10:05 pm

jerry2 wrote:I don't know if I have Gilbert syndrome, but I have too high bilirubin all my life. And I have geographic tongue that as opposed to what books say, get me a burning pain when I have a new red spot on my tongue :-(


I have exactly the same thing with the geographic tongue burning pain on red spots. Gilbert Syndome is any elevated levels of billrubin, so you have itbut not of concern it is estimated 5% of the population have it and it's hereditary.
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Re: Howdy All...

Postby raindog on August 13th, 2012, 5:24 pm

Elevated here too. GP says ive always had elevated bilirubin. On the plus side we apparently have less chance of coronary heart disease. :D
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Re: Howdy All...

Postby glitterwater on August 14th, 2012, 7:06 am

Howdy Angus. Sorry to hear you're suffering, but glad to hear from you. I have Gilbert's too, along with hashimoto 's thyroiditis and something called bicuspid aortic valve (similar to mitral valve prolapse). None of these things require treatment, but have all been found in my Bfs work ups. I stopped getting Bfs work ups a long time ago. Didn't want them to find anything more! Oh they also found a rare antibody and a cyst on my lung. Again no treatment needed, just one more thing to monitor and worry about.
"O Lord my God, I cried to you for help, and you have healed me." Psalms 30:2
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Re: Howdy All...

Postby raindog on August 14th, 2012, 9:38 am

Mmmm seems it can be linked with Chronic Fatigue Syndrome too....oh and muscle twitching is common

http://www.gilbertssyndrome.com/symptoms.php
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Re: Howdy All...

Postby angusglover on August 31st, 2012, 1:42 pm

raindog wrote:Mmmm seems it can be linked with Chronic Fatigue Syndrome too....oh and muscle twitching is common

http://www.gilbertssyndrome.com/symptoms.php



Yeah, my doc thinks my symptoms are more like FMS \ CFS...
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Re: Howdy All...

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