A.S. Face 0567: David Heflin

My name is David Heflin and I am a 37 year old Christian minister living in Portales, NM. At the beginning of 2011, I started Taekwondo with my oldest son. I was inspired to be working out again and lost thirty pounds, as I also began training for a 10K. In mid-March, during kicking drills, I felt a sharp pain in my left hip. A few days later the same thing happened on my right side. At the time, I just thought they were just muscle strains and went on with my activities.
At first, things didn’t get much worse and I just had occasional reminders that I wasn’t healed. I finished my first belt test and ran my 10K, without a lot of problems. I first began to believe I had a significant problem when, after a couple of months rest, the injury felt as if I had never rested it a day. The pain in my left hip was significantly worse than the pain in my right, but the symptoms were the same. By October, I saw my first two doctors, my general and a sports doctor.
The initial diagnosis was tendinosis. However, none of the home rehab and subsequent injections did anything. My first MRI, in January of 2012, revealed nothing. Seeing that the sports doctor intended to treat it the same way, despite the lack of progress, we finally got a second opinion from an orthopedic surgeon. He immediately began to talk about hip impingement (FAI) and a labral tear. We tried an intra-articular hip injection, which did, at least, prove the pain was coming from my hip. Another MRI (but this time with an arthrogram) revealed a significant labral tear in the left hip, but along with an x-ray, arthritis in both hips was revealed.
I was referred to yet another doctor for arthroscopic hip surgery to repair the labral and correct the impingement issues. If all went well, the right hip would follow. In pre-surgery consultation, the new x-rays revealed fused SI joints with complete fusion on the right. This is the first time a doctor ever said the words “ankylosingspondalitis” to me. My blood tests, including HLA-B27, came back negative and I thought that was the end of it. But on the day of my surgery, the doctor told me he wasn’t convinced and that something was going on. He did the surgery and referred me to a rheumatologist.
Though the surgery was technically successful, it did not relieve my pain, which I now know is due to inflammation. When I finally saw the rheumatologist she informed me that with my symptoms, x-rays—completely fused right SI joint, MRI’s, and family history (Dad has psoriasis, brother has Chrohn’s, Mom has ulcerative colitis—In other words, we are an autoimmune mess!) that I was basically a “slam dunk” A.S. diagnosis even with the HLA-B27 negative.
Since then there have been a lot of ups and downs. Enbrel was effective at first, but then began to fade. On Simponi now and neither biologic has been particularly effective. I have joint pain and enthesitis throughout my body. My hips are the worst and now a rare form of inflammation has been discovered in my GI track. Currently, I am scheduled for a liver biopsy and may be sent to the Mayo clinic, if we can’t get to the bottom of it.
My pain is level is usually manageable but so widespread. I am resolute, however, that no matter what may come, my God, my family, and my church will go through it with me.

 

New Mexico United States of America

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7 Responses to “A.S. Face 0567: David Heflin”

  1. David, thank you for your story. It’s nice that you shared that you were a pastor. I dont have too much in the way of support as far as friends and family as for whatever reason, they do not believe the doctor’s diagnosis although I am HLA B27 positive have elevated sed rate at onset, crp and positive ANA. The pain started for me 14 years ago with numbness going down my left leg and the doctors then thought it was MS and wanted to treat me. I waited. Here we are today with my diagnosis this past May. My faith is weak……

  2. Stephanie, thanks for commenting and sharing a little about yourself. I’ll pray for both of us as we struggle with faith. Faith doesn’t come easy to pastors either…people just think that it does!

    I have probably benefited from the fact that a man in our church has struggled with the worst side of this disease very publicly for years. So, I have the opposite problem. I tell someone that I have the same disease as Joe and I have be quick to tell them that it’s not really that bad!

    My rheumatologist believes I’m a good candidate to remain highly functional. I will say, however, that I’ve been amazed that what I thought was a simple hip muscle strain has led me down to this point!

    Many stories on this blog are very sobering. I have not and maybe will never suffer as much as many of them. But the point, and what is good for our faith, is to know that whatever degree of suffering, we do not have to suffer alone. I’m very thankful for a site like this where people do get it.

  3. Thank you for sharing your story. I am sorry to hear that you are battling this, but it sounds like you have a positive attitude about it. And I am glad that you have found a knowledgable rheumy who realizes that you odn’t have to be positive for the gene to have AS. I too have a family history of crohn’s and psoriasis, which helped my rheumy make the diagnosis. I do, however, have the gene. I don’t have any fusing, but my MRI showed sacroiliitis, or inflammation of the SI joints, consistent with AS. I have also recently developed iritis. Unfortunately the NSAIDs alone were not enough, and I failed Humira, so I am now on IV Remicade.

  4. Thanks Kim for sharing. My rheumy’s husband has A.S., so that can’t hurt in having a doctor who’s on top of A.S.!

  5. Dear David,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  6. Hi David: I am also HLA-B27 negative, but I have A.S.! Best wishes to you with your A.S. Welcome to our group! Stephania/Face #445

  7. Thanks, Stephanie. Good to hear from you!

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