A.S. Face 1558: Vikki Towsey

Face 1558

 

 

My name is Vikki Towsey. I am 42 years old. I am a wife and a mother to 4 biological children and 1 fostered.  Three grown and two more on their way.  My story begins as a child. I had constant digestive issues and bone pain. My parents took me to different doctors and I was just diagnosed as a “sickly” child. If I did not get enough rest this seemed to compound the issue.

Along the time my oldest son was born I began having repeated bouts of sciatica, SI and hip pain. Sometimes it would last a couple of days but no more than a week, but during these episodes the pain was intense. My left leg would give out. I would fall. I could not take care of my son by myself. It was hard to work. I suffered constant fatigue. I cannot tell you how many Doctors I saw during this time. This went on for years. The digestive issues also continued. The episodes began to last much longer. Around 2011, I woke up one morning, and could not walk. I could not bear weight on my legs due to the extreme, white hot pain that radiated down my right lower back and hip area. I had a CT scan. I was diagnosed with bursitis and given muscles relaxers, naproxen and prednisone.  I did improve however I still had pain the reoccurred and that would disrupt my work and life. In 2013, I had another episode, of extreme pain that radiated from my low back to my hip. This time the pain did not improve. I had an MRI and was referred to a main management specialist. Who diagnosed me with “Sacroiliac Dysfunction”. He stated my MRI showed signs of normal wear and tear but my SI joints were causing major issues. For two years I would have shots in those joints every time I had a flare up of pain.

In June of 2015, I began experiencing pain again so I attempted to make an appointment with my pain doctor. I was informed that my Doctor was out on sick leave and I would be seeing another doctor. Little did I know or did that doctor know, he would be responsible for saving my life. You see living with chronic pain changes you. It convinces you it would be easier not to feel. I was at my breaking point. I was tired of the injections. I was tired of the pills, I was tired of fighting, I was tired of feeling like there was something wrong and not knowing what it was.  While performing my injections the new doctor stopped and said “do you know you have more arthritis in your right hip then most of my geriatric patients?” He showed me the black shadowy appearance stating that arthritis will show up a dark charcoal color on a X-ray. My hip was one big black spot in the frame. He referred me for blood work and further X-rays. He called me back about a week later and stated my blood work has come back abnormal and he was referring me to a Rheumatologist.  This was in July. It was explained to me that in my town Rheumatologist are a rare breed so I might have a wait for an appointment. That wait was 3 months. 3 months of constant pain and fear of what possibly the abnormal blood work meant. At this point I was almost bed ridden. This was the end of July my appointment was not until September 20, 2015. This was not optimal as I was hired on as a consultant/contractor at a new agency.

When September 20, 2015, arrived, it felt like Christmas. Finally, some answers! I filled out my new patient information in advance. I was ready. Upon meeting the doctor he did the standard exam, asked the standard routine exam questions. Pushed on my joints, looked at my hands and feet, he asked some probing questions. At the end of the exam he stated, “I believe you have bursitis but I am going to send you to send you for an MRI and blood work. He also gave me a brief description of an illness that a small portion of the population has- without putting an actual name to it- but he dismissed my chances of having it. I know now this was AS. He never called me with the results of my blood work.  I called him. He never returned my call, the nurse did.  The nurse informed me that I was HLA B27 positive. She immediately said that it would be treated aggressively. I said treat what “aggressively”? She could not give me diagnosis information, she said. I would need to speak with the Doctor.  I asked if he had mentioned my hip at all. She stated no, there were no notes however; there was fusion in my SI joint debating back from 2011 from a CT scan I had.

After my MRI, I received a phone call on a Friday evening as I was leaving work. The receptionist informed me that my doctor would like to see me as soon as possible at is very next cancelation which would be Tuesday morning. At that appointment, my Rheumatologist diagnosed with Undifferentiated SpA. He prescribed me Humira and asked that I come back in January. This was in November. Now I knew at that appointment my actual diagnosis is AS. I am HLA B27 positive, I have SI fusing and other markers for AS. To give me a generic diagnosis like that was a slap in the face for me. I knew I would not get the care from him that I so desperately needed. At my first appointment he was dismissive and basically ruled out the disease I now know I have, prior to any actual tests being done. When I left his office, I immediately made an appointment with another Rheumatologist. Guess what it did not take another three months to get an appointment. I would be seen within 30 days.

Flash forward to today, after my initial appointment with the new Rheumatologist, I’m amazed.  Night and day The experience was totally different. Dr. Carlson listened to me. Agreed that I had Ankylosing Spondylitis, there was no doubt. I also learned that I have Fibromyalgia, hypermobility and likely have inflammatory bowel disease. I also have eczema. Talk about a through exam.  I am still trying to process this information. As grateful as I am to finally being able to put pieces of this puzzle together, I still am absorbing that I have multiple issues. I mean I knew it was possible to be diagnosed with more than one autoimmune disorder but it is still a lot to wrap your head around. I also have additional prescriptions to help with pain and inflammation and cream for the eczema. Yay me!

Virginia, United States of America

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2 Responses to “A.S. Face 1558: Vikki Towsey”

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

  2. Welcome Vikki!

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