Episode from the podcastThe Axial Spondyloarthritis Podcast

Cary King: His Ankylosing Spondylitis Journey

Released Sunday, 27th September 2020
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Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm really excited because part of what I want to do with this show is bring people's stories to all of you listeners. And I do that by interviewing people that have Ankylosing Spondylitis or non radiographic. And today, I've got a really great guest. I've got Cary King on and Cary has been dealing with Ankylosing Spondylitis. Oh, geez, most of his life and was diagnosed about 12 years or so ago in his late 40s. And has had a interesting journey that I thought was really great to share with everybody. And with that said, Cary, how are you doing today? 

I'm doing fine. How are you today, Jayson?

Great, I really appreciate the time to come on and talk with all the listeners to share your story about your journey with Ankylosing Spondylitis. What I'd like you to do is kind of take us back to what it was like for you before the diagnosis, what led you up to finally getting that diagnosis? 

Sure. I actually started on NSAIDs when I was in my teens, when they came out with them, actually, before that I was on Feldene and to cope with arthritic pain, and they could not figure out why I had arthritic pain at that age. So I lived on NSAIDs all the way up till I was about 46 years old and at that point, they took me off the NSAIDs because I had been diagnosed with kidney failure due to some nerve damage from my spine and that's when I got the diagnosis, too. But I had ankylosing spondylitis, and what caused us to become aware of that is once they took me off of it and said two weeks later, I had reached two feet to get a telephone while I was standing and the phone was ringing and I ended up on the floor for three hours and then the bed for three days until I went to the neurological surgeon in Nashville, Tennessee at the time, I was living in Owensboro, Kentucky, and then a man, he diagnosed me with ankylosing spondylitis and said that if he touched me in any way with surgery, I would really have a paralyzed and he started me in the process of going to pain management doctors, because they had different ways to be able to treat it to keep you comfortable and have a good life. But one of the things that I've learned from that journey is you've got to find out why pain management doctor that knows how to do the injections and put the needles, back spots where they move to put the steroids so that you can live a comfortable life. 

You and I talked a little bit before we recorded many people that are diagnosed with either non radiographic or as you were Ankylosing Spondylitis will take a biologic, but you were not able to do that tell a little bit about what happened there. 

Now Actually, I never was allowed to do biologics because kidney failure prevents you from doing biologics. So I've had to cope around it without any form of biologics, which I have always wished I could, I understand you can get a lot of relief from them. 

Again, this is what makes this disease so difficult is that all of us deal with these symptoms completely different, and what affects one person, another person may have no issues with at all and that from a patient standpoint, it's very frustrating. 

It is and the other frustration with ankylosing spondylitis is there's nobody has ever put together a real comprehensive list of all of the peripheral illnesses that you have to deal with sometimes with this disease. And so you go through the process of living with this disease, and every time you turn around, they're giving you a new diagnosis of something else. It's a problem.

Well, and you know, I'm not really sure if I think we keep discovering new peripheral issues that this disease kicks out. When I was diagnosed, it was 1984 a completely different time. What I was told... Support this podcast

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