A.S. Face 1635: Kylie Frost

Face 1635

Hi my name is Kylie and I am a 42-year-old mother of 6. I had my first real flare at age 11. At the time it I was told I had strained my back horse riding. After that I had a lot of ankle pain but my lower back didn’t get bad until my first pregnancy at 21. This time I was told it was just from being pregnant. Over the next 15 years I went back to my doctor repeatedly with different symptoms. I was never taken seriously and never treated. I had no tests done except blood tests which showed inflammation but nothing else.
By 35 I had to give up my job as a chef due to my worsening health. I was told at this point lose weight and have a better diet and you will be fine. But no one ever asked me about my diet which was actually very good.
Finally at age 40 I could afford to pay to see a private rheumatologist to try to get answers. After one appointment I was told that all of my symptoms could be caused by Ankylosing Spondylitis which my brother also had. (He was diagnosed 15 years earlier and I had told my doctor and he said I had been tested for it)
After spending nearly $4000 (NZ) I was told he believed I had AS but there was not enough damage on the MRI to prove it. So anti inflammatory and physical therapy were my only options for now.
My regular doctor then informed me that I couldn’t possibly have AS and it was my mind playing tricks on me. The pain wasn’t real. So I found a new doctor. He took new xRay’s of my thoracic spine and si joints. They showed early fusing in one Si joint and fusing in a small area of my thoracic area plus my upper spine and neck had the distinctive curve forming that is seen in AS patients. He confirmed the AS diagnosis and was happy to treat it as such. I still don’t qualify for biologic as it isn’t showing up in both Si joints. My local hospital will not redo the MRI and the last doctor I saw there ignored the evidence of fusing and tried to tell me it is just my muscles hurting. He said there is no treatment t available for me at this stage. (He would not look at the newer tests that show damage and was going off the MRI which was a lot older). My ribs no longer move so my lung capacity is greatly reduced. I can not lift my arms to brush my hair some days. My pain is constant even though I exercise for 3-7 hours a week. I have made a decision not to wait for doctors to take me seriously. I have a great doctor, cardiologist, physical therapist and a very supportive husband who always seems to know what I need. I have always wanted to complete a triathlon. So 14 months ago I decided to try I control my AS with exercise and I set myself a series of goals. My next one is a sprint triathlon in November 2016. If you want to follow my journey on Facebook you can. Kylie’s race to beat Ankylosing Spondylitis.

New Zealand

3 Responses to “A.S. Face 1635: Kylie Frost”

  1. Dear Kylie,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Welcome Kylie what state do you live in? Has the rheumatologist did the blood test for the hla b27 factor. But it sounds like you haven’t seen a pain Doctor they are your only help. I am amazed at your run best of luck and God bless you.

    • I am in New Zealand. Yeas I am HLA-B27 positive. We don’t really have pain management here like you do in the states. We do but getting in to see them is very hard. I have an amazing doctor who is a skeletal specialist. He confirmed Ankylosis Spondylitis based of fusing on my x-rays. Unfortunately most of my issues now are from the damage that was done waiting to get a diagnosis.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: