A.S. Face 0484: Ashley Bryant

I am 24 years young, and right around the time I was 19 I suddenly started having sharp, blinding pains in my hip joints. Every time I took a step I had to take caution because I often lost feeling in my legs and fell. I had no idea what was going on and had initially thought I had a pinched nerve, so I saw the doctor. She said I was having muscle spasms and prescribed me a mild muscle relaxer. I asked her if she was sure, because the pain was located deep in my hip joint. She said she was positive and sent me on my way. The pain continued for a few months, alternating sides of my hip until one day the pain disappeared completely. I thought this problem had somehow corrected itself and I wouldn’t have any other issues again. 9 months later, the pain had started to creep back into my life. It wasn’t as bad at first, but eventually the pain had returned worse than it had ever been. I used to be an avid runner, but could no longer run (or even walk some days) and gave up running and any exercise in general as it was too painful. I moved to a new area once again saw a doctor who unfortunately didn’t know what was going on. He prescribed me Vicodin and referred me to a Back School. The medication took the edge off the pain, but I wasn’t getting any better. It got much worse to the point where I wouldn’t be able to go to work, school or walk around for days in a row. I decided to try a chiropractor, still thinking I had a pinched nerve in my hips. He was a very kind person, but he had no idea what was going on. I went to him for adjustments for a year, took special joint supplements, they tried ultrasound treatments on me, electrical impulses, etc. Nothing ever helped and the X-rays showed inflammation and bilateral sacroiilitis, but he had never made much of a diagnosis. He suggested I might have a cyst in my hip that needs to be removed and that might be what’s causing the inflammation. A few days after this diagnosis, I was hit with the worst flare up I had ever suffered. I couldn’t stand, sit, lay down, walk or do anything. No position in the world was comfortable and I laid in bed all night long crying. I had hit my breaking point. I felt so out of control and that I would never find anyone who could tell me what was going on. That was one of the worst nights in my entire life and all the pent up anger and frustration had come out uncontrollably. My husband took me to the ER because he too was frustrated with the situation, so off we went. I was operating under the diagnosis of a cyst in my hip, so when we got there we told the doctor of the cyst and asked to have it removed. I brought my MRI, X-rays and other doctor’s notes and they said they couldn’t help me because the chiropractor had misdiagnosed me. They could only run some blood work, make a guess as to what it was and send me home with some medication. The next day I hobbled to a different doctor to see if she might have any new ideas. She ran some bloodwork and decided to test me for the HLA-B27 gene, something to my knowledge no other doctor had thought to do. She then referred me to rheumatologist and was pleasantly surprised! I described my symptoms, she asked about family history, she took new X-rays and MRIs and without missing a beat she gave my illness a name: Ankylosing Spondylitis. My rheumatologist is a wonderful woman who is compassionate and has great bedside manner; something I had never experienced!

From here, things only improved. Although it took 9 months of trying different medications, I finally started Enbrel in February of 2011 and it has been an absolute godsend. I finally have my life back! Since starting Enbrel I might have had 3 flare ups total. I am once again active and after years, I can finally run again! I no longer have days where I cannot walk or move around, I don’t miss work or school anymore because of my illness, and things are finally starting to return to normal.

I feel so lucky because so many people can go a decade or more without being diagnosed. So many people are living in pain because they have no idea that this illness might be a possibility for them, and others haven’t found the right medication for their AS. Some people accuse them of being a hypochondriac, or complaining of a little back pain. It’s been a difficult road learning to accept my illness and adjusting my life accordingly, but I haven’t felt this healthy and hopeful in years. I’m looking forward to a cure!

Ashley Bryant

Arizona United States of America

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8 Responses to “A.S. Face 0484: Ashley Bryant”

  1. hi amanda im robert welcome and thankyou for your story …awarness is the key to finding a cure one day ,,,,have a great day

    Rob

  2. Dear Ashley,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

    Please accept my sincerest apology for mistyping your name.

  3. What can I say? You don’t need any cheering up from me Amanda-hell, you just cheered me up! I think you just cheered us all up! Where’s Stephania?-here’s another Enbrel success story for ya. You are bright shining HOPE Ashley. (oh, oh, she signed Ashley but the caption sez Amanda?-THAT my friends, would be the first mistake I’ve ever seen Big sista make!!(Cookie))

  4. Ashley,
    I can VERY much relate to your story. The pain also began for me at age 19. I’m 26 now, still suffer quite a bit, but the one thing that has helped me is Enbrel. And narcotics. I’m on an extremely high dose of narcotics but when they help, I’m okay with that.

    I even went through surgeries (unsuccessful) not to mention YEARS of PT. Yes, YEARS. (aren’t they supposed to yank a patient out of PT after three WEEKS of no improvement…yeah) But Enbrel is what I needed. My symptoms are crystal clear…all perfectly match Ankylosing Spondylitis. I diagnosed myself through google after being to an insane amount of “specialists” Doctors infuriate me. I’m still looking for that good one… my GP has been great. But I definitely know waaay more about my condition than he does (I have to help him spell it every time…and “AS…that’s inflammation in the SI join correct”??) …yes, I call this a good doctor after who I’ve seen.

    But anyway, glad to hear success stories with happy ending. I havent posted on here yet but need to! I’ve been reading posts forever!!!

    Jenna

  5. hi i my self have been through many sugerys to remove bone shorten it in my arms ,i have a.s i was tested and came back 95% pos it is very painfull at times i have it in 3 places in my lower spine my neck,my wrisys knees and hips but recentley ivve been getting migtrains very bad ones that make me sick to my stomach last one i had i almost called 911 it was so paiin full ,,,keep pluging waye im on a load of meds for pain and inflamation,im waiting to see my rummy then i know my meds will change it sucks im 45 years old i cant work due to the pain and lack of movment in my arms it sucks but we all have to stay positive awarnes is the key to this deases just like cancer then they will focus on finfing a cure one day i hope you all are having a good day its raining here in bc so im real stiff and sore one day at a time p m a thhankyou and good luck

  6. I am so happy for you. I am still trying to find the “right” treatment. I am hopeful. began the anti-inflamation diet today.

  7. hi ashley im rob thankyou for your story alot of us are alike we need to make this deaseas moreaware of myself am organizing a rally to brigh awarness to a.s here wear i live and hopfull rais some funds to go towards recearch in finding a cure or meds that help us ,,it sucks and the but you dont look sick coments i get all the time make me so mad ,,it inspires me to do what i can to help ..all my best to you ashley if you ever need somone to talk to im alwayse here rob as face 0402 …you take care and again thankyou for your story ,,:)

  8. I’m glad you got a diagnosis and have med that will help.That indeed is a blessing and esp at a young age. Thank you for sharing your story. I don’t have insurance so no meds for me, but at 50 years of age, I became a black belt despite the pain, inflammation and ‘issues’ of AS. I’m thankful for a community that encourages each other. May things only get better for you.

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