A.S. Face 2094: Stephanie Sumner-Erskine

My name is Stephanie Sumner-Erskine, I am a Blogger, Wife, Step Mother, Pet Guardian and Kitchen Witch and I was diagnosed with A.S in 2017 at the age of 25.
My story begins much earlier though, I remember being a small child…probably around the age of 5 having unusual leg pains. Doctors for YEARS passed off my leg pains and feet pain as “growing pains”. The pain worsened through my preteens into my teenage years and began to become pretty constant around 6th grade. I remember CRYING my self to sleep as night as doctors continued to tell my mother it was growing pains.
At 13 I saw a Orthopedic Surgeon who after taking a few X-rays of my legs was still persistent that it was just growing pains and it would go away. I continued on and so did the pain, At around 15 years old I went into a short period of remission that lasted around 6 months and I was exercising regularly, I was even completing in deadlifting competitions through a program at the school I attended and dominating but this short period came to a quick end when almost overnight the pain came back with a vengeance.
Things got really bad my Senior year of High School, I struggled to get around and I begged my primary care doctor to do something to help because I knew it could no longer be “growing pains”. She was totally convinced it was “weight-related” and told me to drop some weight, at this time I was around 180lbs and just KNEW my pain was not weight related. I met with the nutritionist, lost a little bit of weight and still nothing.
I spent months going to the doctors and begging, I finally convinced my PCP to do some bloodwork, she tested for things like diabetes, Lyme and more…all came back negative. I was told to take some OTC painkillers and try to stay active and lose weight.
At 22 my pain became it’s worse, I was struggling to get around and had pain almost every day. At this time I started seeking out other doctors who would take my pain seriously and spent the next two years jumping doctor to doctor, being accused of wanting drugs and “doctor shopping”. I could not get any doctors to listen and found my self in the ER often due to pain that was so bad I couldnt talk. Sometimes I was met with compassion and other times I was accused of just wanting drugs.
In the ER is where it was discovered that my CRP was in the high 40s and that my body was dealing with some major inflammation issues. Around this time is also when I developed a case of Gastrisis due to the OTC painkillers I was taking and I ended up REALLY sick.
I finally found a new PCP who ordered a bunch of tests including blood work, X-rays, MRI and more. It was discovered during this time that I had a “bone island” in my shin and that there were some issues with one of my hips and the lower discs in my back.
I was then referred to a neurosurgeon who after looking over my X-rays pretty much told me he had no idea what was wrong with me because HE didn’t see anything wrong on the x-rays and MRI and that surgery wasnt an option and he couldn’t treat me.
Back to the PCP I sent and they referred me to a local Pain Clinic. Another complete waste of time if you ask me…the doctor looked me over and said it COULD be Fibromyalgia but I “didn’t fit the criteria” He was another doctor who he had no idea what exactly was wrong with me and that HE didnt see anything wrong other then the inflammation levels.
I was then referred to the local spine clinic and the new doctor I saw was amazing, he was so compassionate and decided to try his best to try and treat what was called “Chronic Pain” at the time. I had 2 epidural steroid injections that didn’t do much and after they failed he suggested I apply for Medical Marijuana in my state because he had other patients who had success dropping their inflammation marker using it. I applied and got approved in Feb 2017…started dosing right away and I was able to drop my inflammation markers from the high 40s to an 11 in just a few weeks!
At this time he stated he really thought I should see a rheumatologist and gave me a referral to the one he shares an office with.
In July of 2017 is when I saw her for the first time and I was SO excited because I was her very first patient at the new office because she had transferred from another state. She ordered TONS of blood work, Xrays, MRI.
She told me at her first meeting that based on my symptoms she truly thought I had some form of spondylitis. A few weeks later I got a call and went back into the office and while my blood work came back that I was HLA-B27 negative it was confirmed via MRI that I have Ankylosing Spondylitis, There were MAJOR changes in my SI joint, she also stated that the previous “bone island” in my shin could very well have been an early sign on A.S.
It felt AMAZING to finally have a diagnosis but I was angry that it took SO many years to get a diagnosis, at this time I had been in pain for over 10 years! I had spent countless hours begging doctors to do something and I was brushed off for SO many years. My rheumatologist stated at this time the changes in my hip were consider drastic and she was very confused on why it took so many years to get a proper diagnosis. I still find my self-angry but I am grateful to finally have a diagnosis. I feel like A.S controlled my life for SO many years but not anymore!
I do struggle with being only 26 years old and having to use aids such as canes and walkers and having to rely on my husband for care at times but I am learning to listen to my body and to not feel bad about having to focus on self care.

Vermont, United States of America


One Response to “A.S. Face 2094: Stephanie Sumner-Erskine”

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

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