A.S. Face 2079: Carrie Preston

Face 2079

I first started having lower back pain in my late teens. I attributed it to being overweight, which is what my doctor told me as well. By the time I was 21, I was having even more pain all over my spine, pelvis, and issues with fatigue and tennis elbow. My new doctor who I had been seeing for over two years had been charting my pain and health issues, and then one day she tells me she thinks I have Fibromyalgia. I also had MRI’s of my whole spine that showed extensive damage to my spine, hips, and knees. I had “degenerative arthritis” by the age of 21, or so I had been told.
After 21, I lost my insurance for a number of years and had no way to see the doctors I needed to see, so I went on with my life. The pain and all my other ailments continued to worsen every year. After marrying my husband in 2006, I once again had insurance and was able to see several different doctors. I was diagnosed with all sorts of spine issues again around 2008, including cervical kyphosis. I was having horrible migraines caused from my spine, of which I still have today.
Over the years my white cell count would constantly stay high, in the 20K range, and I ran low fevers all the time. My doctors would watch it but never could figure out why. I was eventually sent to an oncologist/hematologist around 2009 who ran all kinds of tests and the only thing he could figure out was that I had inflammation going throughout my whole body but didn’t know why. He said he thought it was something autoimmune. I took this information back to my GP and once again, I went on with my life. After constant complaining of pelvic pain and hip pain, I was sent for a CT scan of my pelvis and he told me it was just sacroilitis, inflammation, and it was caused from my weight. He never did consider any other issues. During this time period I had also been diagnosed with Atrial Fibrillation, SVT, Atrial flutters, all heart arrhythmias.

In 2013 my husband took a new job in NKY and it meant us moving. This also meant new doctors. I told my new internist my past issues with my spine and he sent me for an MRI of my lower spine that showed Osteitis Condensans Ilii, a very rare condition of the illiac where it hardens. We were both dumbfounded, so he sent me to an orthopedic surgeon who told me I needed to lose weight but there might be a chance I’ve got something autoimmune going on. My internist was quite upset of how I was dismissed by the Ortho and he said there was definitely more going on. So, it was then I finally saw a Rheumatologist.
My Rheumatologist sent me for further MRI’s but it took a year to get my thoracic MRI approved by insurance. I was sent to the oncologist once again just to double check everything and even had bone marrow testing, and was told once again that it had to be autoimmune. Finally after having Xrays of the thoracic spine they approved the MRI. The radiologist said his findings looked like Ankylosing Spondylitis and I had ankylosis across the costovertebral junctions in several locations between T4 and T11, along with severe arthritis, sclerosis on both sides of the joints, inflammatory stranding, and the list goes on and on. It basically lit up like fireworks. My Rheumatologist went into action starting me on several meds and therapy after receiving my results back and that was last fall of 2017. I’ve failed at most medications including Enbrel and other DMRD’s, anti inflammatory medications etc.. I also have fractures in my spine that I didn’t know I had before these MRI’s. Over the past two years my ability to walk and stand has lessened to the point where I’m now using an electric wheelie at the store and a walker most of the time. I cannot stand more than five minutes at all anymore. By the time I got my diagnosis, the damage was already done. This diagnosis and disease has changed my life. I spend most days in a haze, crying every day, wondering how I’m going to manage in the future. On one hand I’m so glad to finally know what’s wrong with me and why I’m hurting so badly, but it’s also a very lonely and sad diagnosis. I’ve learned to take it day by day and that’s all I can do.

Kentucky, United States of America

4 Responses to “A.S. Face 2079: Carrie Preston”

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

  2. Thanks for sharing Carrie! You will never be alone in this group. We love and understand you. It is so refreshing to know that everyday, in whatever you face, someone has prob been there. Though we may not have all the answers we definately can relate. Welcome!

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