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cheerleader

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SMP51, my husband is the same! Was a physically fit health nut! The hospital respiratory tech told him about testing a 30 something man who told him he could hold his breath for 5 minutes if they wanted him to. He was a Navy Seal- and you don't get more fit than that! And there he was with ALS! Your analogy about the candle may be correct, but very sad! If you take care of yourself, seems like the result should be a long, healthy life! But didn't our mothers always tell us life isn't always fair?
 

GregK

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I am always in a bit of a quandary when it comes to those 'rate your health' questions on the Dr. office forms.

I keep looking for the "Excellent, except for the fatal MND" choice....
 

affected

Guru status reached
Joined
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lala land
I agree, Chris would often say - I've never been so healthy and yet so sick in my life ...
 

Nikki J

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Oh Greg,me too! I really puzzled over that one last week!
 

Lilacs53

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Joined
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Messages
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Diagnosis
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Me too, lived a healthy lifestyle and was pretty healthy until this came along... it really sucks. I wonder if this is this the case for the majority of us? :?:
 

SMP51

Senior member
Joined
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Messages
675
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I think it is Lilacs. I noticed soon after joining here that when folks talk about what they used to do, all in all they are a very physical active healthy lot
 

Lilacs53

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Joined
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There has to be a connection .... somehow
 

nebrhahe53

Very helpful member
Joined
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Messages
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Ill tell you what irks me..every damn blood test I take comes back normal...so why dont my parts work?
 

Lilacs53

Distinguished member
Joined
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Messages
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I hear ya nebrhahe53, mine do too.
 

pearshoot

Senior member
Joined
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Messages
633
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Diagnosis
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mo
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nixa
My sin was diet coke....is it possible aspartame was my tipping point after agent orange....no soda since dec/09....too late
 

MaxEidswick

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Joined
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>was my tipping point after agent orange.

yeah sure, everyone blames 'nam :)
 

nebrhahe53

Very helpful member
Joined
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Messages
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Max to answer your question the Houston clinic is miles above anything that Austin offers. They were very thorough with blood tests-I gave enough for a donatation and they did real breathing studies with a real pulmonologist both sitting and lying down. Incidentally, my numbers in Houston were in the mid 70s while in Austin they were in the high 50s. They noted a great deal of muscle wastage on my left side.
They also did mechanical studies to see how my hands were affected
In short, anyone really interested in the best care would take the 3 hr drive from Austin to Houston. Thats what we are doing from now on.
Dr Simpson is very impressive, and the clinicians there think they have the first really effective drug in trials now. The MS drug Giieyna was said to markedly slow down ALS progression in the trials they are doing. They say they are having trouble getting the FDA to approve the drug for ALS which is too bad considering Novartis charges 5-6000
month for 28 pills and insurance wont pay off label. In the meantime, if you can get a dr to give you an ms diagnosis, you would be ahead of the game.
 

MaxEidswick

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Joined
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Messages
5,567
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PALS
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>Max to answer your question the Houston clinic is

my experience too


>hey were very thorough with blood tests-I gave enough for a donatation

I think they fund the clinic with our blood -- 14 vials last time!


>they did real breathing studies with a real pulmonologist both sitting and lying down. Incidentally, my numbers in Houston were in the mid 70s while in Austin they were in the high 50s. They noted a great deal of muscle wastage on my left side.


Holland & co., are pretty serious. 70's are good :)


>They also did mechanical studies to see how my hands were affected

yeah, I hate these tests. Sandy keeps a worksheet of my results


>In short, anyone really interested in the best care would take the 3 hr drive from Austin to Houston. Thats what we are doing from now on.

:)


>Dr Simpson is very impressive, and


Ericka is Stanley's heir apparent :) -- hard to live up to the best!


>the clinicians there think they have the first really effective drug in trials now. The MS drug Giieyna was said to markedly slow down ALS progression in the trials they are doing. They say they are having trouble getting the FDA to approve the drug for ALS which is too bad considering Novartis charges 5-6000 month for 28 pills and insurance wont pay off label. In the meantime, if you can get a dr to give you an ms diagnosis, you would be ahead of the game.

yup, been known for about 3 years, but ffda blocks us. may have a va in, will update!
 

ardalon

Active member
Joined
Jan 5, 2014
Messages
61
Reason
PALS
Diagnosis
07/2013
Country
DE
State
Germany
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Jossgrund
I don't think so. I've never been a sports folk. I'm a lazy bone and still caught it. No one knows why some get sick and others not. My mum is 88 and has never ever been sick in her life.
 

frankb

Senior member
Joined
Jun 8, 2011
Messages
578
Reason
PALS
Diagnosis
10/2010
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US
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Georgia
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Sandy Springs
Max: Please keep us posted on the potential VA in ! !
 
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