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I'm running away!!!!!!!!!!!
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<blockquote data-quote="Tiapet" data-source="post: 134081" data-attributes="member: 455"><p>You don't have to be fused. That is end progression, something they try to prevent. I'm not there yet thank god! I do have the genetic marker but only found out after they found it on x-ray. MRI won't show ankylosing (but shows darn near everything else wrong with my back- which is extensive and we won't go there either). A normal simple xray shows it but ONLY if the tech reading it knows what they are looking for. Over 12 years ago my x-ray showed it and it got totally dismissed. Fast forward to now and like I said, fighting with doctors and more tests, and I'm here down at Duke and another set of x-rays and it was found again and NOT ignored. I have always had high sed rates but no one pieced it together. Also had high c reactive protein (another indicator). When that was first found back in Aug 2005 my GP freaked because of heart (which launched me into cardio **** and found I had a massive silent heart attack - another whole story in itself) so she was all nuts over c reactive but knew nothing of ankylosing either (nor did I at that point either). Again fast forward to now and I learned the connection "inflammation" just like sed rate.</p><p></p><p>There are a lot of indicators but the people must know what they are looking for. Ankylosing, as you might know if you do know about it, also affects more then just your back, hips, knees, ankles feet, extremities (each person different). In my case it was moderately severe in my back from cervical to lumbar spine, no extremities involved. It has now progressed to my hips and knees in the last year. Still no fusing. It can attack the eyes (iritis), heart (my case it may have) and other internal organs. Eventually in can squish your lungs and make it hard to breath to (sometimes I have a hard time but overall not to bad - some need to be put on oxygen). It is not something to mess around with. My sister appears to have it too as her spine is fused but no one is listening to her but again, she is back in PA where I used to be and no one listened to me.</p><p></p><p>Push hard if you think no one is listening to you. In the mean time here is a couple of websites to help you out. I think my email is linked here as well if you don't want to pm. I'd be glad to help or talk, what ever you need.</p><p></p><p><a href="http://www.spondylitis.org/" target="_blank">http://www.spondylitis.org/</a></p><p><a href="http://www.kickas.org/" target="_blank">http://www.kickas.org/</a></p><p><a href="http://www.arthritis.ca/" target="_blank">http://www.arthritis.ca/</a></p></blockquote><p></p>
[QUOTE="Tiapet, post: 134081, member: 455"] You don't have to be fused. That is end progression, something they try to prevent. I'm not there yet thank god! I do have the genetic marker but only found out after they found it on x-ray. MRI won't show ankylosing (but shows darn near everything else wrong with my back- which is extensive and we won't go there either). A normal simple xray shows it but ONLY if the tech reading it knows what they are looking for. Over 12 years ago my x-ray showed it and it got totally dismissed. Fast forward to now and like I said, fighting with doctors and more tests, and I'm here down at Duke and another set of x-rays and it was found again and NOT ignored. I have always had high sed rates but no one pieced it together. Also had high c reactive protein (another indicator). When that was first found back in Aug 2005 my GP freaked because of heart (which launched me into cardio **** and found I had a massive silent heart attack - another whole story in itself) so she was all nuts over c reactive but knew nothing of ankylosing either (nor did I at that point either). Again fast forward to now and I learned the connection "inflammation" just like sed rate. There are a lot of indicators but the people must know what they are looking for. Ankylosing, as you might know if you do know about it, also affects more then just your back, hips, knees, ankles feet, extremities (each person different). In my case it was moderately severe in my back from cervical to lumbar spine, no extremities involved. It has now progressed to my hips and knees in the last year. Still no fusing. It can attack the eyes (iritis), heart (my case it may have) and other internal organs. Eventually in can squish your lungs and make it hard to breath to (sometimes I have a hard time but overall not to bad - some need to be put on oxygen). It is not something to mess around with. My sister appears to have it too as her spine is fused but no one is listening to her but again, she is back in PA where I used to be and no one listened to me. Push hard if you think no one is listening to you. In the mean time here is a couple of websites to help you out. I think my email is linked here as well if you don't want to pm. I'd be glad to help or talk, what ever you need. [url]http://www.spondylitis.org/[/url] [url]http://www.kickas.org/[/url] [url]http://www.arthritis.ca/[/url] [/QUOTE]
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