Official Diagnosis: Ankylosing Spondylitis

Tuesday, September 21, 2010

I started having severe pain in my ankles when I was 8 years old. Doctors realized that I had extremely loose ligaments called Hypermobility Syndrome. They did not think it warranted as much pain as I was in until they realized that at 8 years old I already had osteo-arthritis in my ankles. Plenty of people have loose ligaments - they're called "flexible" - but only ~1% of the population has it to my severity.

At 14 years old, I was diagnosed with Spondylolithesis, Grade 5 out of 5. My spine had slipped off and was in two pieces literally hanging on my spinal cord. I underwent a massive spinal fusion and spent 8 months in bed rest. Again, some degrees of Spondylolithesis are relatively common, but Grade 5 is found in less than 1% of the population.

At 18 years old, I blew out my left knee while standing, just standing. I tore my ACL severely and nearly destroyed my medial meniscus. When I was 25 I had it repaired, but they can't replace it even though I need it, because my ligaments are too loose.

My ankle pain has now reduced my functioning to less than 90 minutes a day total. I had an ankle fusion in 2009 because I had a broken bone in both my ankles and the arthritis was horrible. I only had the right one fused because it did not resolve any of my pain issues. I then had the screw removed to make sure it wasn't a reaction to the metal causing the pain. My back pain has continued to get worse and worse and finally my ankle doctor sent me to a back physiologist who discovered arthritis all throughout my pelvic joints and up through most of my back.

He then sent me to a rheumatologist and after a parade of testing and consulting with my other doctors has given me the diagnosis of Ankylosing Spondylitis. Another condition that only occurs in ~1% of the population! In fact, one of the reasons it took so long for them to decide I had AS is because I already have 2 other conditions that have a 1% frequency and even though it's not technically impossible for me to have 3 rare diseases it is extremely statistically unlikely!!!

** Remind me to play the lottery!**

Anyway, AS is a condition caused by an autoimmune disorder that causes the abnormal degeneration and fusing of your spine. It also has a strong correlation (especially in women) of peripheral arthritis (ankles, knees and hips). So, after nearly 20 years - they have the diagnosis!!

I finally got approved for Enbrel which is an immunosuppresant injection I'll take once a week to handicap my immune system and [hopefully] stop it from destroying my body! I'm going to the doctor today to be taught how to take it and should start today! It can take anywhere from 1-6 weeks to feel the effects and up to 3 months for the full effect.

Since steroid injections, physical therapy, and pain medications don't work on me, it is seriously my last resort. My doctor says there are 2 more medications in the same category I can try if this one doesn't work, but that's it. I know I'll probably never be pain free, but I need to be functional. I'm 27 and have spent 9 years in school trying to get my Bachelors. I have 2 semesters left to get a degree in Psychology (I had to give up nursing because of all the pain) and I don't even know if I'll ever be able to work again. Immunosuppressants carry very serious side effects, because I'll be immuno-compromised and vulnerable to everything. But at this point, I'll gladly risk it if it means I can have my life back.

I hate to put all my eggs in one basket, but that's the situation. So here's hoping this stuff works wonders and I can at least live a somewhat functional life!

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Member Comments About This Blog Post
    Holy moly! Those are some interesting ailments..interesting because I don't have them, I'm sure. You seem to have a very good attitude about it all. My fingers are crossed for you that the Enbrel works!
    3762 days ago
    I am reading your blog and feel like you are writing my blog, if there were blogs 15 years ago.

    It does get better. When I got my dx, I was in my eighth year of college and also recovering from a horribly abusive relationship.

    Since finding out what was wrong with me, I was able to finish my degree, get a good job, meet an awesome NICE guy, and now I have a beautiful 4 year old boy. My life is night and day different from how it was then. I sometimes can't believe it.

    Please check your spark mail and drop me a note.
    3763 days ago
    My dear girl - what a life of pain you have had. I hope these injections will help you. As you say, you have your whole life ahead of you. I want you to have a happy life and all that comes with it! Hugs from Ohio
    3767 days ago
    My goodness, Kerry. I guess I'm glad for you to finally have an "answer," but...jeesh, I can't even really express my feelings here because the blank computer will yell at me for swearing. I'll send you an e-mail.

    3767 days ago
  • no profile photo CD5837461
    Glad they have given you a diagnosos...hope the shots help! I will be thinking of you! Hang in there!
    3769 days ago
  • JET150
    I am glad they've given you a diagnosis, and have a plan for treatment, but awfully sorry to hear of what a lifelong struggle this has been for you. You are in my good thoughts and prayers.
    3769 days ago
    All of us on the Wave Runner team are cheering on to better health. Please post on the Changing Tides team when you can and we will keep you in our thoughts and prayers.
    Participate with us as much or as little as you are in charge!!!

    3769 days ago
    My buddy Kerry, I am sending you lots of hugs and lifting you up in prayer. My thoughts are with you. I hate that you are going through this. Know how strong you are and visualize yourself living the life you dream. You deserve it. PLease keep us posted. I'm cheering for you, keeping my fingers crossed and praying for the best!!!
    3770 days ago
  • AMAS92568
    I hope this works. Hang in there. emoticon
    3770 days ago
  • no profile photo CD1276095
    Prayers for your treatment to work!
    3770 days ago
    Good luck are strong!!!

    3770 days ago
    Thank you for the update. You have been on my mind a lot lately, especially since I have not seen any posts or recent activity. So sorry you have had an incredible portion of your life revolve around physical pain. Here's hoping the meds can be very effective for you. Please keep me posted on your progress.
    3770 days ago
  • DAISY443
    I have had a spondylolisthesis and cannot imagine the pain you have. I am hoping and praying that your new therapy will give you relief! Hugs and prayers!
    3770 days ago
    Sometimes a workable diagnosis is so long in coming, isn't it? I hope the Enbrel will help to target the specific immune-system problem that has produced AS. You are so very persistent, though!It's a great asset of yours, and your determination is also a wonderful attribute. I hope you'll get the relief you need to complete your studies and embark on a career you love. emoticon - Sandi emoticon
    3770 days ago
  • LINDA!
    Hugs to you! emoticon Being in pain can be unbearable. I hope the meds work.
    3770 days ago
  • no profile photo CD5707126
    emoticon and emoticon I hope that you have success with the new medications.
    3770 days ago
    Oh Gosh! How awful!. Stay strong and remember we are all here for you!
    3770 days ago
  • no profile photo CD5123585
    Hang in there! I'm sorry to hear that you are having such serious medical issues, but I'm glad they figured out what was going on! Take care & keep us posted on how you are doing.
    3771 days ago
    1. Play the lottery.


    2. Let me know if there's ever a fundraiser for your condition, particularly if I can pedal and raise money + awareness.

    3. I hope that you've found some peace in the diagnosis, after not knowing for so long.

    4. Reach out anytime you need support. This is a lot to carry alone and you have friends that are willing to share the burden with you.

    I'm so glad that you didn't let the previous doctor end your search for options. I am sending all sorts of positive thoughts your way that this remedy will help you regain your life.

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    3771 days ago
  • AMBER281
    Good luck. I sure hope it works for you!
    3771 days ago
    i sure hope this works for you. good luck
    3771 days ago
    I have no idea how you must feel, though I did watch my mother go through chronic pain and I know it is a daily battle. Keep up that positive attitude, girl, and don't give up.
    3771 days ago
    I will definitely keep good thoughts for you and for the success of this medication!
    3771 days ago
  • TORKA1
    Hang in there! Fingers crossed the meds work and you get some relief. I know this has to be tough on you -- but from what I can see, your spirit is tougher.

    3771 days ago
    I hope all this stuff works too! I know it is hard to go day to day with a lot of pain and I think you are very courageous to be facing all these diagnoses with such grace! Hang in there and I hope that things get better for you - and YES - get that lottery ticket!!!
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    3771 days ago
  • JODY22002
    I am also i that 1% of the population. Did the Dr suggest a starch free diet?
    3771 days ago
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