Comments for Athletes Joined Against Spondylitis http://www.joinedagainst.org A 501(c)(3) non-profit entity Mon, 01 Oct 2012 18:59:53 +0000 hourly 1 http://wordpress.org/?v=3.0.4 Comment on Who tells the story of ankylosing spondylitis? by Chip http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/LUlZU2StMyU/ Chip Mon, 01 Oct 2012 18:59:53 +0000 http://www.joinedagainst.org/?p=176#comment-344 I am 54 years old and was diagnosed in my early 20's with AS. I was on NSAID's until my mid 40's, went through a lot of stiffness and pain, but then swithched to Enbrel. This made a huge improvement to my overall well being. Although having limited motion due to the AS, I am back downhill skiing again, something I loved to do prior to the AS. I keep to the intermediate slopes, but at least get me out doing something I love to do. I am 54 years old and was diagnosed in my early 20′s with AS. I was on NSAID’s until my mid 40′s, went through a lot of stiffness and pain, but then swithched to Enbrel. This made a huge improvement to my overall well being. Although having limited motion due to the AS, I am back downhill skiing again, something I loved to do prior to the AS. I keep to the intermediate slopes, but at least get me out doing something I love to do.

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-344 Comment on Who tells the story of ankylosing spondylitis? by parth http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/KecJdrBKcYY/ parth Fri, 27 Jul 2012 09:05:53 +0000 http://www.joinedagainst.org/?p=176#comment-342 i am 19 and i got tested +ve for hla b27 after i started experiencing sudden pain and inflamation in my both knees and left hip. Initially i was unable to get up from my bed or walk bt after walking for sometime and having a heating pad wrapped around my knees for 15 minutes i felt almost no pain and was able to perform regular activity. Fortunately my MRI show no deformities or fusion of spine and as per my orthopedic and reumatologist i m just on intial stage which is quite easy to cure. i am 19 and i got tested +ve for hla b27 after i started experiencing sudden pain and inflamation in my both knees and left hip. Initially i was unable to get up from my bed or walk bt after walking for sometime and having a heating pad wrapped around my knees for 15 minutes i felt almost no pain and was able to perform regular activity. Fortunately my MRI show no deformities or fusion of spine and as per my orthopedic and reumatologist i m just on intial stage which is quite easy to cure.

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-342 Comment on Who tells the story of ankylosing spondylitis? by David Wilson http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/edBRc_BetFs/ David Wilson Wed, 25 Jul 2012 12:20:55 +0000 http://www.joinedagainst.org/?p=176#comment-341 hi There, My friend David is riding his bike across Canada in an effort to raise awareness and funds for this disease, here's his story, he sure could use any publicity or advise you could share, thank you ... >For years I have wanted to ride a bike across Canada. At the same time my dream was becoming a reality, I was suffering more and more with back pain. I have struggled with back pain for nearly 20 years. Seeing doctor after doctor my condition went undiagnosed until I was 29 years old. It wasn't until I was watching a Motley Crue documentary, that I learned Mick Mars had Ankylosing Spondlylitis, a disease with many similar symptoms as mine. When I approached my family doctor, curious if this may be what was wrong with me, he insisted it was not. His reason was because in his 40 years of practice he had never diagnosed anybody with Ankylosing Spondylitis. Two years later, with much research and the discovering of some great specialists at The Arthritis Research Foundation, I have been diagnosed. Here I sit now, wondering how many people with this disease went undiagnosed as a patient of his, and how many other people are suffering with this disease without a diagnosis. As I started to make plans and got an official diagnosis, I felt I was obligated to use my ride as a form of raising awareness for Ankylosing Spodylitis. It is one of the most undiagnosed diseases in North America. This ride is to raise money and more importantly awareness for The Arthritis Research Foundatin in Toronto. I believe, with their efforts to find a cure and their passion to improve the quality of life with Ankylosing Spondylitis patients, this is a worthy cause. hi There, My friend David is riding his bike across Canada in an effort to raise awareness and funds for this disease, here’s his story, he sure could use any publicity or advise you could share, thank you …

>For years I have wanted to ride a bike across Canada. At the same time my dream was becoming a reality, I was suffering more and more with back pain. I have struggled with back pain for nearly 20 years. Seeing doctor after doctor my condition went undiagnosed until I was 29 years old. It wasn’t until I was watching a Motley Crue documentary, that I learned Mick Mars had Ankylosing Spondlylitis, a disease with many similar symptoms as mine. When I approached my family doctor, curious if this may be what was wrong with me, he insisted it was not. His reason was because in his 40 years of practice he had never diagnosed anybody with Ankylosing Spondylitis. Two years later, with much research and the discovering of some great specialists at The Arthritis Research Foundation, I have been diagnosed. Here I sit now, wondering how many people with this disease went undiagnosed as a patient of his, and how many other people are suffering with this disease without a diagnosis.

As I started to make plans and got an official diagnosis, I felt I was obligated to use my ride as a form of raising awareness for Ankylosing Spodylitis. It is one of the most undiagnosed diseases in North America.

This ride is to raise money and more importantly awareness for The Arthritis Research Foundatin in Toronto. I believe, with their efforts to find a cure and their passion to improve the quality of life with Ankylosing Spondylitis patients, this is a worthy cause.

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-341 Comment on Who tells the story of ankylosing spondylitis? by Wendy http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/vB1dACNpLsA/ Wendy Wed, 09 May 2012 14:11:04 +0000 http://www.joinedagainst.org/?p=176#comment-314 Hi, I am so sorry to hear such anguish. No, there's no link that's been shown or suspected between masturbation and ankylosing spondylitis. You might want to talk to your healthcare provider about the long-term side effects of indometacin. It can effect your digestive system as well as your mental sense of well being. It could be that some other course of treatment might do just as well for your AS without wreaking havoc on the rest of you. Are you able to do any form of exercise? Perhaps some gentle stretching or yoga would at least help. This <a href="http://www.spondylitis.org/about/exercise_posture.aspx" rel="nofollow">web page </a> has a good discussion of exercise for people with AS and offers some books and DVDs that you can buy, as well. It's from the Spondylitis Association of America (they're out in California, and not affiliated with us). Good luck and let us know how you're doing! Hi, I am so sorry to hear such anguish. No, there’s no link that’s been shown or suspected between masturbation and ankylosing spondylitis.

You might want to talk to your healthcare provider about the long-term side effects of indometacin. It can effect your digestive system as well as your mental sense of well being. It could be that some other course of treatment might do just as well for your AS without wreaking havoc on the rest of you.

Are you able to do any form of exercise? Perhaps some gentle stretching or yoga would at least help. This web page has a good discussion of exercise for people with AS and offers some books and DVDs that you can buy, as well. It’s from the Spondylitis Association of America (they’re out in California, and not affiliated with us).

Good luck and let us know how you’re doing!

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-314 Comment on Who tells the story of ankylosing spondylitis? by M.CHRISTO NAVEEN http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/NDx7Soz8PqI/ M.CHRISTO NAVEEN Tue, 08 May 2012 18:56:53 +0000 http://www.joinedagainst.org/?p=176#comment-313 I am 24 years old. I started having having back ache from the age of 16 & many doctor told that it was a muscle catch but i was able to do my work well , i use to do cycling and play cricket but when i was 19 my pain started to increase i was not able to walk in the normal way. I was diagonised with AS & i had steriods & indometacin as my medication it was good in the begining but after few months steriods created me more side effects in my body. Now i am continuing with indometacin & homeopathy but i dont find any relief . i am walking like a 80 year old man , i hate to live in this world. I have a doubt is there any relationship between AS & masturbution??? Is AS the punishment given by the GOD for masterbution?? Some one say me please . EVERYDAY SEEMS TO LOOK LIKE A HELL. I am 24 years old. I started having having back ache from the age of 16 & many doctor told that it was a muscle catch but i was able to do my work well , i use to do cycling and play cricket but when i was 19 my pain started to increase i was not able to walk in the normal way. I was diagonised with AS & i had steriods & indometacin as my medication it was good in the begining but after few months steriods created me more side effects in my body. Now i am continuing with indometacin & homeopathy but i dont find any relief . i am walking like a 80 year old man , i hate to live in this world. I have a doubt is there any relationship between AS & masturbution??? Is AS the punishment given by the GOD for masterbution?? Some one say me please . EVERYDAY SEEMS TO LOOK LIKE A HELL.

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-313 Comment on Who tells the story of ankylosing spondylitis? by Frank http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/j-F6-Rit8e0/ Frank Wed, 02 May 2012 22:40:16 +0000 http://www.joinedagainst.org/?p=176#comment-308 I am 51 years old. I had lower back pain and severe sciatica in my twenties. I was very active in my twenties, thirties, and forties. I too went many times to doctors for lower back. This included a chiropractor. It was he who after a severe neck issue wasn't responding to treatment,took xrays and saw bridging,he did not diagnose me but did get me going in the right direction. I have been on Enbrel for about 5 years and it works wonders. I own and operate a very busy family restaurant, walk and exercise daily. Fatigue is sometimes an issue but I think it is more from my work schedule than the AS. I was also 50 pounds heavier and loosing the weight helps too. Anyone can feel free to email me at fcunetto@yahoo.com I'm no expert but I know what works for me. I am 51 years old. I had lower back pain and severe sciatica in my twenties. I was very active in my twenties, thirties, and forties. I too went many times to doctors for lower back. This included a chiropractor. It was he who after a severe neck issue wasn’t responding to treatment,took xrays and saw bridging,he did not diagnose me but did get me going in the right direction. I have been on Enbrel for about 5 years and it works wonders. I own and operate a very busy family restaurant, walk and exercise daily. Fatigue is sometimes an issue but I think it is more from my work schedule than the AS. I was also 50 pounds heavier and loosing the weight helps too. Anyone can feel free to email me at fcunetto@yahoo.com I’m no expert but I know what works for me.

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-308 Comment on Who tells the story of ankylosing spondylitis? by Wendy http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/EPEn8TEQLR4/ Wendy Mon, 26 Mar 2012 12:46:47 +0000 http://www.joinedagainst.org/?p=176#comment-295 Thanks, Tim! Hang in there! Are you still on Embrel? Thanks, Tim! Hang in there! Are you still on Embrel?

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-295 Comment on Who tells the story of ankylosing spondylitis? by Wendy http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/OxH6118Yzic/ Wendy Mon, 26 Mar 2012 12:45:43 +0000 http://www.joinedagainst.org/?p=176#comment-294 Thank you so much for sharing, Julie! How are things going now, especially with your daughter getting bigger? As you can see from the other comments, you are not alone! Hang in there. Thank you so much for sharing, Julie! How are things going now, especially with your daughter getting bigger? As you can see from the other comments, you are not alone! Hang in there.

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-294 Comment on Who tells the story of ankylosing spondylitis? by Wendy http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/65reJxhmVfo/ Wendy Mon, 26 Mar 2012 12:43:43 +0000 http://www.joinedagainst.org/?p=176#comment-293 Thanks, Whitney! Thanks, Whitney!

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-293 Comment on Who tells the story of ankylosing spondylitis? by Wendy http://feedproxy.google.com/~r/CommentsForAthletesJoinedAgainstSpondylitis/~3/HhuBfHMXN_E/ Wendy Mon, 26 Mar 2012 12:43:11 +0000 http://www.joinedagainst.org/?p=176#comment-292 Congratulations, Anastasia! Thank you very much for sharing. Is all still going well? How is your pain level now, with your daughter getting bigger? Congratulations, Anastasia! Thank you very much for sharing. Is all still going well? How is your pain level now, with your daughter getting bigger?

]]> http://www.joinedagainst.org/who-tells-the-story-of-ankylosing-spondylitis/comment-page-1/#comment-292