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An update, of sorts

KimD592KKimD592 Posts: 435
edited 06/11/2012 - 8:57 AM in Chronic Pain
Hi everyone! I realize I haven't been here in AGES, so I figured I'd update. A lot has happened in the past several weeks. First of all, I have officially been diagnosed with AS (ankylosing spondylitis). I just saw the rheumy yesterday and he confirmed the diagnosis. I started Diclofenac yesterday and he is sending me for more bloodwork and an MRI of my SI joints to check for the extent of damage/disease progression. I go back in a few weeks to discuss other treatment options, which he said will most likely be Humira.

I had gotten a third opinion with a NS a couple of weeks ago, who happened to be the first doctor to ever mention AS to me. My rheumy said I should thank him, and I really think I'm going to write a letter to express my gratitude. He flat out told me, "Do NOT have another surgery," and I am going to take his advice. He recommended intensive PT and possibly a facet block in the area that is really bothering me. I meet with the PM doc on Monday to discuss that. I have started going to PT twice a week and am feeling very optimistic about it. The PT said that because of the AS, I am likely going to have to continue with the exercises I learn in PT for the rest of my life, in order to maintain mobility and flexibility. She also recommended water therapy as a means of exercise, so I am going to look into that as well. It is a HUGE weight off of my shoulders to know I will NOT be having another surgery. And for a NS to say NO surgery, especially when their biggest revenue is from performing surgery, it was refreshing to hear.

It is bittersweet because on the one hand, I want to just be a normal 29-year old and not be dealing with all of this stuff. On the other hand, it is a relief to finally have an answer as to what's been plaguing me all of these years. And now that I know what I'm up against, I can begin to figure out ways to fight it and maintain my quality of life.

Unfortunately the AS is not the only issue I'm dealing with right now. My BP has remained elevated for a couple of weeks now. My PCP had said he wanted to continue to monitor it while I work on lifestyle modification (aka diet and exercise), however, in the meantime I developed another retinal tear, my 4th actually, in my eye. I went this morning to have it lasered in order to seal it off and prevent it from progressing. I should be used to it by now, being that this is the 4th time it's happened, but it definitely does not get any easier. I honestly started feeling nauseated and lightheaded by the end, but luckily I managed to avoid passing out. In any case, my opthalmologist does not believe the high blood pressure has any relation to the retinal tear, but I do not necessarily buy that. This is the second time this has happened while having issues with high blood pressure. So I called my PCP yesterday, after the tear was diagnosed, and asked him if I could start a low dose medication, while working on diet and exercise. My fear is that if my BP doesn't go down, what if I end up with another tear. He agreed and started me on Norvasc 5 mg daily.

So, that is about it. I have decided that I need a complete overhaul in my life, and I'm not letting the AS diagnosis be the end. For me, this is just the beginning and I am going to take charge of my health and try to get myself into better shape. I had a mini breakdown as my mom and I were walking back to the car today, after the laser procedure. I sobbed and said I was sick and tired of being poked and prodded and doctors constantly finding new ways to torture me. Some days I feel like if it's this bad now, how bad is it going to get when I'm older? However, after crying and venting for a couple of minutes, I felt better and I felt ready to take on the world again. I've been blessed with amazing family and friends, and that is what will help to get me through the tough times.

Anyway, sorry to write a book! As I said, it's been a chaotic 2 or 3 weeks. I hope everyone is doing well, and I truly appreciate all of the support you've given me over these past few months. I will continue to come around as often as I can. My hands have been bothering me a lot these days, and typing is not always the easiest task.


  • Thank you KimD592. Your post was inspirational and I'm in great need of inspiration these days!!!
  • yes, being poked and prodded so much IS frustrating - especially for someone your age. I'm glad you won't be having surgery, that things seem to be looking up for you spine-wise, and that they finally have a handle on what's causing some of your symptoms (namely, the AS). Here's hoping you'll be able to tolerate the new meds. Keep hanging in there - you've been an inspiration to us all! Love 'n >:D< , Ess
  • Kim,

    This may be little consolation, but it's good that it did not take longer to diagnose the AS. Since women present AS differently from men, and the various body parts that are affected, a diagnosis can be difficult.

    The rheumatologist can help you keep the inflammation in check and help through the "flares". The exercise, especially water aerobics is great. The self-administration is not a big deal for Humira and Enbrel. Is a retinal tear and iritis related? Iritis can be an issue with those with AS (but I've never had it).

    It sounds like you are in very good hands. You've done great dealing with all the issues you've faced.

    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • I am so proud of you for taking your health so seriously all along, constantly looking for answers, and never giving up. You are an inspiration to all, who feel they need to keep searching for what ails them.

    I am sorry that you have your diagnosis, but at the same time, you now know and can deal with it, work with it, and make positive changes to help.

    Good luck to you with all your lifestyle changes, diet,excercise, physio. I am sure in turn you will get your BP under control.

    My hat is off to you, for not giving up searching for answers.

    Big >:D<
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Thank you, everyone, for your supportive comments.

    Karen - I actually do feel very grateful that I have finally received a proper diagnosis. It's funny because the first NS I had seen (didn't end up having the surgery with him) was the first one to mention AS to me. Even my rheumy was impressed by the fact that a NS diagnosed a rheumatic disease. lol. I am planning on writing a letter to express my gratitude to him, for steering me in the right direction. I honestly feel like fate brought me to him. Had I not seen him prior to having the surgery, I likely would have continued on for many more years experiencing painful symptoms and not knowing what caused it.

    It's funny because I've had back pain since I was a teenager. The joint pain began, if I remember correctly, shortly after my son was born 10 years ago. It got to the point that no one could tell me what was wrong except for fibro (that diagnosis was later revoked), but I knew in my heart that wasn't right because my symptoms didn't match. I stopped talking to family, friends, and doctors about the pain. It honestly got to the point that I began to question whether it was just normal to be in this kind of pain as we age. I often sat there wondering if my other friends my age had the same pains as I did. Now I realize it was/is not normal, and it is a huge weight off of my shoulders to finally know what has been plaguing me all of these years.
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