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Spine disease

So I went to a new doctor today. He had diagnosed me with Ankylosing spondylitis. Still have to get blood tests but just by the looks of my ct scan and MRI he could see my spine is starting to deform and vertabraes are spurred and some are almost touching around the disks. Any one ever heard of such a thing? I looked it up and the symptoms are right on. Just hope I can get it fixed before it's too late :/


  • josbornejjosborne Posts: 86
    edited 06/04/2014 - 8:21 AM

    I also have ankylosing spondylitis, has your dr made a treatment plan for you? Ive just started on Enbrel. If you have any questions or just need to vent to someone, im here for you. I understand completely what you are going through. Its a disease that isnt heard of often but needs to be. Im still going through my grieving phase as I was just diagnosed on 5/13/14 but im here to talk if you need anything!
    (12.24.13) L2-L3 Laminectomy, Discectomy and Coflex insertion. DX'ed with Ankylosing Spondylitis on 5/13/14
  • Also, Not to get you down, but there isnt a cure for AS. but there are ways to slow down the progression of the disease through biologic drugs which is what I am on. I currently am showing alot of damage in my hips and my SI. I was actually negative for the gene that is a marker for AS so even if that comes up negative in your bloodwork, you could still have it. People also have the gene but dont have AS. But I wish you well on finding some relief soon as I know how painful it can be.
    (12.24.13) L2-L3 Laminectomy, Discectomy and Coflex insertion. DX'ed with Ankylosing Spondylitis on 5/13/14
  • No plan yet. I am to talk more about it next appointment in 2 weeks. I am just happy I found a doctor that was willing to look at my underlying problem instead of suggesting nerve blocks and surgery to have a chance of pain reduction and no real reason as to why I feel the way I have been regardless of stretching, lifting, medecine and spinal stimulator. He had mentioned an injection I would give myself once every other week that would slow the degeneration and lesses inflammation which sounds pretty good to me. But I'm glad I got response. I know it's something not very many people know about even though it seems to effect a younger person more often than older people (over 45). I'm just very tired of the constant pain in my hips. And he fact that if I try to rest I get inflamed. So with my fusion keeping me being mobile for too long and my AS keeping me resting peacefully my life has become quite the battle. Both mentally and physically.
  • dilaurodilauro ConnecticutPosts: 9,842
    edited 06/04/2014 - 2:15 PM
    that have no cure for.
    But at the same time, we should get away from calling them DISEASE.


    Because once you mention that word, it seems that it is the end. When in reality almost 99% of all spinal and joint conditions, including AS, Arthritis and more have means to help slow it down and make it more manageable..

    Two very important things

    • 1. YOU - Thats us, the individual who has the problem, we need to keep a positive approach to everhty8ing.
      2. DOCTOR - Suggesting different approaches to help manage the problem.
    Without those two working hard every day, then perhaps a spinal aliment can be called a real disease.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I would agree DiLauro but in the case of AS it IS an autoimmune disease that needs to be controlled. Yes it is a good thing to maintain a positive attitude but thats after allowing yourself the proper grieving time. I tried to just be strong for everyone around me and suffered almost a complete meltdown last week. There is a proper way to go about handling it and grieving is sometimes first then it progresses into a positive attitude. As for the Dr. aspect of course you would want to listen to your rheumatologist in regards to your disease progression and what steps to take. AS is NOT a spinal ailment. AS affects your whole body, from your spine, to your hips, to your knees, to your heart and lungs and eyes. It IS a disease. So I would really have to politely disagree with you on this one.

    @jerseypipedreams- I believe your Dr has put you on Humira which is also a very good biologic medicine, Its very similar to the Enbrel injections that I am on but I have to do mine every week. It can be very challenging at times physically and mentally and it is very difficult to find someone else with the same diagnoses but I can be here for you. Im still trying to find my acceptance stage, Im still trying to accept the fact that 6 months after I got married at 26 I got diagnosed with this awful disease. But I can help you with any questions you have, I luckily have one of the best rheumys available and he has provided me with sooo much information :)
    (12.24.13) L2-L3 Laminectomy, Discectomy and Coflex insertion. DX'ed with Ankylosing Spondylitis on 5/13/14
  • Thanks for the responses. It is hard to find anyone that can relate. My parents and girlfriend now realize how hard things have been. Everyone kinda just ignored me because they figured my fusion complications are messing with me until I got diagnosed with AS and now they seem to be a little more forgiving in what they ask of me. At least for now until I get this under control. I'm not on anything specifically for Arthritis yet. Just some tramadol and methocarbanol and flector patches as I too much Aleve messes my stomach. I just want this constant pain to subside for a little while so I can go on vacation comfortably, hurting all the time gets so tiresome. Especially chasing after a 16 month old. I know it's a disease that I can't just get rid of which is a bummer, some times I can handle it. Other times I just want life to end already so I don't have to feel like this for the rest of my days. Hopefully as science makes its leaps and bounds so will our medicine so this ever lasting pain can be stopped and maybe even prevented,
  • @jerseypipes I think once your dr decides to start you on the biologic meds you will start to feel better, they are very difficult to be on and its a big lifestyle change as you have to be cautious of germs and such with it being an immunosuppresant and there can be bad side effects (which is very rare) but they are amazing. Ive done 2 enbrel injections and I would say its decreased my pain about 20% so far. I also caught bronchitis which im trying to fight off but in my opinion bronchitis is better than AS pain. It is very difficult with children to be in pain constantly, I understand this, I have a 7r old stepson and a little girl that just turned 3 years old and its a struggle to take care of them. Are you seeing a rheumatologist yet?
    (12.24.13) L2-L3 Laminectomy, Discectomy and Coflex insertion. DX'ed with Ankylosing Spondylitis on 5/13/14
  • Thanks, it can just be incredibly frustrating because AS is not a well known disease and most people just assume its normal arthritis, but its defintately not. We have to be in a constant battle against our immune systems and take dangerous injections because thats really the only medication thats useful for the disease. I just wish everyone knew exactly what it was because it happens so often that I hear "ooh my grandma has arthritis too, and shes not in thaaat much pain, you are probably just faking" or " why cant you just take a tylenol, thats what my grandfather takes for his arthritis" Its much better just to say I have an autoimmune disease that has effected my spine and my hips lol
    (12.24.13) L2-L3 Laminectomy, Discectomy and Coflex insertion. DX'ed with Ankylosing Spondylitis on 5/13/14
  • The problem is everyone has 'back ache' & they can all empathize on their way to play golf or surf or dance the night away. Why don't we all just take a Tylenol & stop complaining..they do?!? ;-)
    Osteoarthritis & DDD.
  • Exactly, im terrified of losing my job, I just had to apply for FMLA leave just incase I get sick from any of my meds, I currently just caught bronchitis and if it turns into pneumonia from my immune system being down and I have to miss work for days from being in the hospital then ill get fired because I had to use all my sick and vacation time for my back surgery.Its really a scary position to be in as im sure you know.
    (12.24.13) L2-L3 Laminectomy, Discectomy and Coflex insertion. DX'ed with Ankylosing Spondylitis on 5/13/14
  • Prepare for the worst & hope for the best. It's sad but true. Chronic pain takes so much out of our control.
    Osteoarthritis & DDD.
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