dARKSTAr Posted April 17, 2002 Share Posted April 17, 2002 With some regret, I'm going to let you in on one of my dirty little secrets. Recently i was diagnosed with Ankylosing Spondylitis, aka AS. You can find out more about it in the links posted here: BTW, i tried to post the fifth link down, cause it easily explains it, but the link wouldn't work when i tried to post it here, seems the URL was too long or something. But that fifth link is a really good one. AS essentially it's a degenerative bone disorder that causes fusing of the vertebrae in the spinal column. The reason that I'm telling you all about it is not to garner sympathy, but to warn you that if you are showing any symptoms of the disease to get checked for it, because it normally shows its first symptoms between the ages of 15-40 and it almost always affects males. It took me quite a few months of testing before i got a proper diagnosis of it. I still have some testing to go before they know the full extent of the damage caused by the disease, but in my case it's pretty severe. I have some fusing of the bones in my sacrum (that's the big bone between your hips, where your bum is...I guess that's that kindest way to say it) and i have fusing of the vertebrae in my neck. Right now i take medicines to help with the pain, which on many days can be debilitating and i'm involved in Physical Therapy 3 days a week to try and improve my range of motion. They suspect that the swelling in my knees is also caused by AS and are planning to due testing on my heart in the next week to see if that's been damaged, fortunately heart damage is fairly rare for AS but they suspect that my heart might be damaged. AS is a sneaky disease. It often starts out as low back pain, which if you're a normal person is easy to dismiss. But if your back pain becomes chronic, please do yourself a favor and get yourself checked out. The disease can be diagnosed from a few simple x-rays if the doctor knows what he is looking for. Unfortunately the first doctor i went to didn't know his ass from a hole in the ground and misdiagnosed me. If it is caught in its early stages, the disease can be handled with some simple range of motion exercises and an attention to your posture. Again, this is not to gain sympathy, but just a friendly word of warning from your neighborhood dARKSTAr. You don't want to be in my position, believe me. I live in near constant pain, and things that i used to take for granted, like tying my shoes, i can't do anymore and if i have to tie them, it becomes a painful trip to the inner reaches of hell. So, again if you've been living with chronic back pain, do yourself a favor and get checked. It might be nothing, but it's better to be safe than sorry. Link to comment Share on other sites More sharing options...
KiwiNZ Posted April 17, 2002 Share Posted April 17, 2002 Hi Darkstar Is yours the progressive degenerative or the remission/ exacerbation form ? I was diagnosed with AS some 20 years ago . I have periods of remission and flareups. Take heart one period of remission lasted 5 years and I managed to regain some lost mobility. I have extensive fusing of 2/3rds of my spine , the sacroilliac joint and the breast joints ( yes all those bits down the sternum are joints) I have also had Heart involvement in the form of Pericarditis . But having said all that life is still great . My best piece of advise is keep as active as the pain will allow its the key to stopping things freezing up. Be positive and take AS on head first it is beatable . If you need advise or what ever feel free to email me . All the best Link to comment Share on other sites More sharing options...
Tim Dorr Veteran Posted April 17, 2002 Veteran Share Posted April 17, 2002 Truely sorry. My family's got history of medical problems so I know how discovering something of this nature can feel. If there's anything that can be done to comfort you, let us know. Link to comment Share on other sites More sharing options...
Osiris Posted April 17, 2002 Share Posted April 17, 2002 Hey Darkstar mate sorry to hear that. So the disease can be settled in the early stages with basic exercises you say? WHat about yours if your in this much pain sounds like yours isnt in the early stages, so are they going to operate or what? Link to comment Share on other sites More sharing options...
dARKSTAr Posted April 17, 2002 Author Share Posted April 17, 2002 KiwiNZ...it has only been recently that i have been diagnosed with AS so the extent of the damage is still somewhat unknown. I'm sure that you know from personal experience that you have to go through a lot of testing. Luckily the doctor that i have right now has knowledge of AS and has been working like a champ for me. We are also in the process of finding a good rheumatologist for me. It's good to hear that the disease hasn't slowed you down. I'm trying to stay as positive as i can about it and realize that i have a lot of work ahead of me. It raises my spirits even higher to hear that you've been dealing with it so successfully! Osiris...the disease can't be cured, at least so far, but in the early stages it can be managed easier and its effects can be curbed. My stage of the disease is in a fairly advanced stage. I've lost a lot of mobility in my neck, find it hard to look up, turn my head from side to side, etc. And i have a lot of pain in my sacrum and knees. Surgery is not an option right now, unless i've had damage to my heart and they need to do corrective surgery there, but back surgery is a last option. Rheumatologists (doctors which specialize in AS and diseases like it) prefer physical therapy and medication before surgery. Now, i have to go get ready to be tortured. That's what i call Physical Therapy. :D It makes you feel better afterwards but it can be grueling. Anyway, thanks for the questions and the good thoughts. Link to comment Share on other sites More sharing options...
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