A.S. Face 0016 : Karly Sevinsky

My name is Karly and I was diagnosed with AS after exhaustingly searching for 10 years. I was diagnosed a year ago at the age of 29. I spent years going to rheumatologists, gastroenterologists (the AS attacked my GI track) cardiologists, orthopedic doctors…you name it. I was referred to a psychiatrist and told I was exaggerating my hip pain! I lost so called “friends” because they thought I was a hypochondriac. I can’t even count how many doctors I saw, and how many of them told me I couldn’t possibly have so much pain at the young age of 29. I was treated like a drug seeker, eventhough I never asked for narcotics, I just wanted to know what was wrong. There were times I could barely walk.

My saving grace was finding Dr. Hema Salvady. She assured me from the start that even if it took forever she would find an answer. She was the first doctor to even bother running genetic tests. I am HLA-B27 positive, which I realize by itself is not a diagnosis of AS, but many xrays and MRIs later I got my diagnosis of AS. I felt vindicated and relieved to have an answer, but scared when I saw the devastation it causes your body. My course of treatment is Humira, nabumetone, zanaflex and tramadol. I know sometime in the future I will most likely need stronger pain medication, but I will cross that bridge when I get there.

My advice to those newly diagnosed or still searching is DONT GIVE UP! You will eventually find a doctor that will listen and want to get to the bottom of your problem. AS is not the end of the road, its a bump. A pretty huge bump, but with the correct course of treatment, its possible to live a full life with this disease. We need to do the best we can to spread awareness of AS, because not everyones symptoms are the same. Awareness helps physicians connect the dots. Also, always ask for a copy of all your test results!!! You never know when a flareup might land you in the hospital, and the last thing you want is to repeat tests you’ve already had. Educate yourself about your AS…research!!

Thanks and God bless,
Karly

Pearland, Texas United States of America

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7 Responses to “A.S. Face 0016 : Karly Sevinsky”

  1. It really astonishes me–and horrifies me–how many people on here have had the problem of people telling them they’re faking. I mean, there are always mean people, but when it’s doctors? Doctors like these should not have a medical degree, if they a) don’t know about an incredibly common disease, and b) tell you that you’re faking simply because they do not have the medical knowledge to find out what’s wrong.

    I’m glad you didn’t give up. Good luck to you!

    • Hey Karina,

      I think it was more frustrating that ive worked in the medical field and have a college degree in nursing so I had quite a bit of knowledge about the situation, and I knew better that I wasn’t getting quality care. I knew there were better doctors out there and better treatments but I couldn’t afford them. I’m having major problems with Dr. Salvady now and trying to find a new one. Just shows this journey never ends! I’m taking it day by day and I know things will get better, you just gotta hang on!

  2. Dear Karly,
    Your journey is a lot like mine, but I didn’t find my saving grace until the age of 43. I am thankful you found yours at a younger age. Stay strong.
    Sincerely Cookie

  3. That is awesome that you found a doctor who is helping you! I’m very happy you have answers, I know it’s a relief after a long, long search. Love you!

    Stephanie said this on October 27, 2011 at 3:02 am

  4. Thanks!

    Karly said this on October 27, 2011 at 1:50 pm

  5. Dear Karly,
    I hate that you have gone through this. I have too. My goal is one day that the medical field will be educated better in dealing with Ankylosing Spondylitis. I am glad you found your saving grace I did also with my doctor.
    Sincerely Cookie

    Cookie Has AS said this on November 5, 2011 at 10:13 pm

  6. Karly, not sure where pearland is. I am north of Dallas. Recently diagnosed, so I am still struggling with all the gamut of emotions. Thankful for the diagnosis, but sad with the recent joint pain in my peripheral joints as well as my back having started approximately 14 years ago. Still in a fog.

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