the thread about nothing...

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DNA test results for CPT-2 deficiency turned out negative, to the surprise of the doctors as well.

So still no diagnosis 
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 I guess we did rule out 1 genetic disorder at least. They said there's definitely something serious going on inside my body but they're back to the drawing board now. Took some more bloodtests today and they scheduled an NMR of my leg muscules and arms for October along with an appointment with a top endocrinologist. Then my follow up appointment is planned for early January

As for treatment, the carnitine supplements obviously help but there's nothing else they can do for now.

At least I can apply for handicap welfare now that my specialist is filling in their part of the application form 
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Turning 29 tomorrow

Ugh :lol:

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My dog has been missing since around 2pm today. Can't find her anywhere. She got out the yard somehow and Nobody in the neighborhood has seen her. I've put up flyers, reported her missing, searched cl, social media posts, aspca, vets and nothing. Let's hope I find her tomorrow...

As disgusting as they are, I hope you're already found her and are spending time reuniting.

DNA test results for CPT-2 deficiency turned out negative, to the surprise of the doctors as well.
So still no diagnosis :smh:  I guess we did rule out 1 genetic disorder at least. They said there's definitely something serious going on inside my body but they're back to the drawing board now. Took some more bloodtests today and they scheduled an NMR of my leg muscules and arms for October along with an appointment with a top endocrinologist. Then my follow up appointment is planned for early January

As for treatment, the carnitine supplements obviously help but there's nothing else they can do for now.
At least I can apply for handicap welfare now that my specialist is filling in their part of the application form :lol:

So doctor papis basically playing WebMD guessing games with what's going on inside of ya body right now?
:x waiting till October and then January? :smh: Stay up b.
 
DNA test results for CPT-2 deficiency turned out negative, to the surprise of the doctors as well.
So still no diagnosis :smh:  I guess we did rule out 1 genetic disorder at least. They said there's definitely something serious going on inside my body but they're back to the drawing board now. Took some more bloodtests today and they scheduled an NMR of my leg muscules and arms for October along with an appointment with a top endocrinologist. Then my follow up appointment is planned for early January

As for treatment, the carnitine supplements obviously help but there's nothing else they can do for now.
At least I can apply for handicap welfare now that my specialist is filling in their part of the application form :lol:

Stay up Fam.

I'm gonna fly you out to this fight me and wavy about to have. Got you with front row seats.
 
So doctor papis basically playing WebMD guessing games with what's going on inside of ya body right now?
:x waiting till October and then January? :smh: Stay up b.
Been waiting almost 3 years for answers now, I'm used to it by now :lol:
The doctors handling my case are a special unit dedicated to diagnosing particularly tough cases. Pretty much House MD in real life.
So I'm at least in good hands now.
When I was first referred to them and they accepted my case back in October 2015, they immediately made more progress in one appointment than all the previous doctors combined. Kept hearing "you're perfectly healthy!" after all kinds of tests the 1,5-2 years before that special team got my case. I had the feeling some of the doctors didn't even believe my symptoms were real. The special diagnostics team took me very seriously right away and found large irregularities in my blood tests on the first appointment. It was just a matter of testing a bunch of non-standard substances.

They know now that something is wrong with providing energy to the muscles but there's a wide variety of disorders that could cause it. CPT-2 deficiency seemed most likely based on my carnitine levels but that's been ruled out now. Everything points in the direction of metabolic disorders so they're going forward in that direction. Problem is there's so many different ones that ultimately produce very similar symptoms. So they're back to grasping at straws now but at least it's down to one jar of straws instead of multiple
 
Been waiting almost 3 years for answers now, I'm used to it by now :lol:
The doctors handling my case are a special unit dedicated to diagnosing particularly tough cases. Pretty much House MD in real life.
So I'm at least in good hands now.
When I was first referred to them and they accepted my case back in October 2015, they immediately made more progress in one appointment than all the previous doctors combined. Kept hearing "you're perfectly healthy!" after all kinds of tests the 1,5-2 years before that special team got my case. I had the feeling some of the doctors didn't even believe my symptoms were real. The special diagnostics team took me very seriously right away and found large irregularities in my blood tests on the first appointment. It was just a matter of testing a bunch of non-standard substances.

They know now that something is wrong with providing energy to the muscles but there's a wide variety of disorders that could cause it. CPT-2 deficiency seemed most likely based on my carnitine levels but that's been ruled out now. Everything points in the direction of metabolic disorders so they're going forward in that direction. Problem is there's so many different ones that ultimately produce very similar symptoms. So they're back to grasping at straws now but at least it's down to one jar of straws instead of multiple

true, props to you for remaining optimistic throughout this ordeal. it'll only make you stronger once you recover.
 
man sorry to hear that Belgium Belgium stay up fam

hope everyone had a good weekend. Skins game tonight....optomistic for another few hours about our year :lol:
 
man sorry to hear that Belgium Belgium stay up fam

hope everyone had a good weekend. Skins game tonight....optomistic for another few hours about our year :lol:
Enjoy. I'll be rooting from my couch. Tried getting off work early so I could beat the game traffic but thats a no go. Looks like a solid 2 hr drive home now smh
 
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Lol I look like Kodak black :lol: :lol: everyone keeps saying that and I keep denying it but the realization is coming out
 
Bro, you gotfa go as kodak black to the Halloween partys. If kodak didnt have weird hair and tatts, i swear i woukd think you were him. How tf is that even possible.
 
Aren't there like 5-7 people in the world who will look similar to you? I swear I heard that or read that somewhere.
 
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