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Diagnosed with AS

#1
(This post was last modified: 11-14-2018, 10:40 AM by Brett.)

Ankylosing Spondylitis (AS) is an autoimmune disease. It's a form of arthritis that primarily affects the spine but other joints can be involved. In my case, I'm currently only feeling it in my SI Joints (lower back/upper butt) perhaps because I caught it early enough. It just hurts to sit at times and feels like a literal pain in the butt/lower back. It causes inflammation of the vertebrae and over time can actually cause some of the vertebrae in your spine to fuse together. Basically in autoimmune diseases, your immune system is mistakenly attacking joint cells.

I'm still kind of in shock because I'm in my early 30's and I've always been healthy and active. I don't drink alcohol, smoke and I've always followed a pretty healthy diet. So this kind of hit me out of left field. It's really kind of frustrating too because even my rheumatologist said I didn't fit all the usual signs of having AS and I was a pretty atypical case scenario (no back pain, no fatigue, decent flexibility). I'm actually pretty scared too...I'll have to take injections for medicine for the rest of my life and although you can still lead a mostly normal life it just sucks knowing I'll never be the same again. I didn't post this for sympathy and to make myself feel better....I just needed to vent. I consider this community as a family of mine with as much time I spend here so just thought it would help to share.
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#2

Damn, Brett. That really stinks. Sorry to hear of the diagnosis and pain you're dealing with.
I hope the treatment turns out to be effective and not too much of a burden.
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#3

(((HUGS)))
What in the Wide Wide World of Sports is agoin' on here???
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#4

Wow... that stinks that you go diagnosed with AS. I really didn't know much about it until I just spent 20 min googling it. Seems like its treatable but will likely be an ongoing arthritic issue but hopefully as our research progresses in the upcoming years, they will find a cure that will eliminate the need for ongoing medication (e.g. pain relievers). Good thing is you exercise and it was diagnosed very early.

Best of luck !!
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#5

That certainly sucks. Hoping for new research breakthroughs for you.
Original Season Ticket Holder - Retired  1995 - 2020


At some point you just have to let go of what you thought should happen and live in what is happening.
 

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#6

I was diagnosed as an A double SS. Is that the same?
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#7

Rates of autoimmune diseases are really growing. And there seem to be far more questions than answers from medical professionals. Considering the rate of growth over the last 50 years or so in these diseases, it really makes you wonder if it is modern day lifestyles and diets that are driving this. I've read/heard/seen countless stories of people doing nothing but changing their diet and showing remarkable improvements from autoimmune disorders.
Even those who think they eat a good diet, the amount of artificial crap you put in your body is amazing.

I have no idea your story or what your doctors are telling you. Obviously they are experts. But it couldn't hurt to read up on the role diets, gut bacteria, and healthy microbiomes can do for autoimmune diseases. May not ultimately be the solution for you but I've heard so many positive stories of people reducing symptoms if not healing themselves, that it could perhaps provide some hope and a feeling that you can take control.


________________________________________________
Scouting well is all that matters.  Draft philosophy is all fluff.
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#8
(This post was last modified: 11-15-2018, 10:48 PM by HandsomeRob86.)

(11-15-2018, 10:34 PM)rfc17 Wrote: Rates of autoimmune diseases are really growing. And there seem to be far more questions than answers from medical professionals.  Considering the rate of growth over the last 50 years or so in these diseases, it really makes you wonder if it is modern day lifestyles and diets that are driving this.  I've read/heard/seen countless stories of people doing nothing but changing their diet and showing remarkable improvements from autoimmune disorders.
Even those who think they eat a good diet, the amount of artificial crap you put in your body is amazing.

I have no idea your story or what your doctors are telling you.  Obviously they are experts.  But it couldn't hurt to read up on the role diets, gut bacteria, and healthy microbiomes can do for autoimmune diseases.  May not ultimately be the solution for you but I've heard so many positive stories of people reducing symptoms if not healing themselves, that it could perhaps provide some hope and a feeling that you can take control.

Its amazing what a diet and gut biome can do. Its not a miracle cure, but its dang close sometimes.

(11-14-2018, 10:30 AM)Brett Wrote: Ankylosing Spondylitis (AS) is an autoimmune disease. It's a form of arthritis that primarily affects the spine but other joints can be involved. In my case, I'm currently only feeling it in my SI Joints (lower back/upper butt) perhaps because I caught it early enough. It just hurts to sit at times and feels like a literal pain in the butt/lower back. It causes inflammation of the vertebrae and over time can actually cause some of the vertebrae in your spine to fuse together. Basically in autoimmune diseases, your immune system is mistakenly attacking joint cells.

I'm still kind of in shock because I'm in my early 30's and I've always been healthy and active. I don't drink alcohol, smoke and I've always followed a pretty healthy diet. So this kind of hit me out of left field. It's really kind of frustrating too because even my rheumatologist said I didn't fit all the usual signs of having AS and I was a pretty atypical case scenario (no back pain, no fatigue, decent flexibility). I'm actually pretty scared too...I'll have to take injections for medicine for the rest of my life and although you can still lead a mostly normal life it just sucks knowing I'll never be the same again. I didn't post this for sympathy and to make myself feel better....I just needed to vent. I consider this community as a family of mine with as much time I spend here so just thought it would help to share.

Sorry to hear that, but this doesn't define your life. You are still you, still healthy and active. Don't quit because you have some extra titles attached. You can do this!


Yes, it's improvement, but it's Blaine Gabbert 2012 level improvement. - Pirkster

http://youtu.be/ouGM3NWpjxk The Home Hypnotist!

http://youtu.be/XQRFkn0Ly3A Media on the Brain Link!
 
Quote:Peyton must store oxygen in that forehead of his. No way I'd still be alive after all that choking.
 
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#9

I work in disability. If your condition worsens and you find yourself not being able to work you might meet a SSA listing. Just met a guy due to ambulation issues due to this.
Huh
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#10

(11-14-2018, 10:30 AM)Brett Wrote: Ankylosing Spondylitis (AS) is an autoimmune disease. It's a form of arthritis that primarily affects the spine but other joints can be involved. In my case, I'm currently only feeling it in my SI Joints (lower back/upper butt) perhaps because I caught it early enough. It just hurts to sit at times and feels like a literal pain in the butt/lower back. It causes inflammation of the vertebrae and over time can actually cause some of the vertebrae in your spine to fuse together. Basically in autoimmune diseases, your immune system is mistakenly attacking joint cells.

I'm still kind of in shock because I'm in my early 30's and I've always been healthy and active. I don't drink alcohol, smoke and I've always followed a pretty healthy diet. So this kind of hit me out of left field. It's really kind of frustrating too because even my rheumatologist said I didn't fit all the usual signs of having AS and I was a pretty atypical case scenario (no back pain, no fatigue, decent flexibility). I'm actually pretty scared too...I'll have to take injections for medicine for the rest of my life and although you can still lead a mostly normal life it just sucks knowing I'll never be the same again. I didn't post this for sympathy and to make myself feel better....I just needed to vent. I consider this community as a family of mine with as much time I spend here so just thought it would help to share.

Sorry to hear of your diagnosis. I doubt it will help much knowing this, but I used to work with a guy who had the same diagnosis, he was about your age when diagnosed and when I knew him was in his late 50s. He led a fairly normal life (well there was his personality but that's another story Smile) and was a pretty active bicyclist.  Best of luck to you.
I'm condescending. That means I talk down to you.
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#11

Sorry to hear, best of luck in your treatment.
“An empty vessel makes the loudest sound, so they that have the least wit are the greatest babblers.”. - Plato

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#12

I will echo the good thoughts in this thread, Brett.
Season Ticket holder since 2004. Smile

 

        
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#13

Keep your head up Brett.  I sometimes have to remind myself that no matter how bad circumstances might be for me at times there are people in this world that are worse off than me.  Good luck to you bro.


There are 10 kinds of people in this world.  Those who understand binary and those who don't.
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#14

I know someone who has been diagnosed with AS. He was 26 years old. He is now 35, and he is living his life like a "normal" person. He just can't play tennis anymore, it's too physical for his back. Now it's swimming and cycling.

It will takes some time to getting used to it, but I'm sure you will be alright.

Good luck Brett.
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