My Ankylosing Spondylitis Journey

I had an appointment with my rheumatologist today, and on the way home I realized I have never explained my condition or how it impacts me and my family on the blog.

I was going to write a long post about Ankylosing Spondylitis and how I came to be diagnosed.

Then it occurred to me that it would be much simpler to just share the letter of complaint that I recently wrote to the original nurse practitioner and doctor who could have diagnosed me. If you have any questions about AS after you read the letter, please feel free to get in touch and I will direct you to any of several sources of information.

Here is a redacted version of the letter I sent.

I am writing this letter to encourage you to update your education and medical practice in regard to the diagnosis and treatment of ankylosing spondylitis in your patient population. My symptoms were dismissed as normal aging by XXX, my lab work was misunderstood by Dr. XXX, and my condition was misdiagnosed, leading to extreme pain and a failure to receive treatment that could have prevented the progression of my disease.
Approximately two years ago during routine office visits, I began complaining to Ms. XXX about pain in my pelvis and right hip. I also told her that I had extreme stiffness in the morning, making it difficult for me to descend the stairs. I told her that sitting in the car for an extended period of time caused the same symptoms. No action was taken at the time.
The same symptoms were present during successive appointments and progressed to include chronic lower back pain. Not until March of 2014 was an xray of my hips finally ordered, after which I received a call from Ms. XXX stating that I had sacroiliitis and degenerative disc disease and that she was going to refer me to physical therapy. No further information was offered during this brief phone call and I was left to look up the diagnoses on the internet.
A subsequent phone call from Ms. XXX informed me that Dr. XXX wanted to have some blood work done, including a test for the presence of HLA-B27. The test was negative, and I was told that I did not have ankylosing spondylitis. No treatment other than physical therapy was discussed or offered for my debilitating pain.
Several months later I presented at the office with excruciating pain in my left shoulder after performing a routine yoga position. I informed Ms. XXX that the pain subsided, then reoccurred when I opened the drapes, then reoccurred again when I raised my arm to brush my hair. I presented in the office as highly emotional, obviously in serious pain, and informed her at that time that I had been in pain for over a year and a half, nothing was being done, and that I had had enough. Ms. XXX then informed me that “Some of this is normal aging” before looking at my chart and saying “well, maybe at my age, I’m a bit older than you.” I was 42. She further stated that she wasn’t “saying that it wasn’t really happening” in a tone that clearly indicated that was, in fact, exactly what she was saying. She briefly considered my existing diagnosis of sacroiliitis, then stated that she “could send me to a rheumatologist, but I don’t know what they would do for you”. She finally offered a prescription for hydrocodone and stated that she would schedule MRIs of my shoulders and hips, with the shoulder in crisis obviously being the priority.
Four days passed with no word from the office while my pain continued unabated. I called the office to find out why the MRI had not been ordered for my acute injury, and I was told that staff members were on vacation. A subsequent call from nurse XXX informed me that they had scheduled an MRI of my right hip for the next week. I was irate, to say the least. I had suffered an acute injury, I had presented in the office hysterical with pain, I had already waited over a year for a diagnosis (now approaching two years) and this person scheduled me for an MRI of the wrong body part for a week out. That was the last straw.
Instead of offering compassion and understanding for a patient of over twenty years in the practice who was in an acute situation, Dr. XXX, Ms. XXX and the medical director decided to dismiss me from the practice. Although the action was somewhat redundant since I had already fired them, it was none the less offensive.
I scheduled an appointment with Dr. XXX of XXX Family Health. He listened intently as I described my symptoms and my experience with XXX. He said that HLA B27 was a gene, not an exclusionary diagnostic tool, and that I needed to see a rheumatologist. Despite the fact that I had signed the in-house XXX form for release of my medical records, Dr. XXX never got the relevant xrays or lab results. He also referred me for physical therapy for my back, and therapist XXX XXX requested the same records. His request was also ignored. I had to personally call XXX, where the staff had been instructed not to speak to me, and leave a message for the office manager asking why my medical records were being withheld. I finally received a call back from someone in medical records stating that she was “backlogged” and “it could still be on her voicemail”, and finally my records were made available to me.
An appointment was scheduled with my wonderful rheumatologist, Dr. XXX, who did a physical exam, listened to my symptoms, and looked at my xrays. He stated that my xrays were obviously abnormal and tentatively diagnosed me with ankylosing spondylitis. He confirmed with an MRI of my sacroiliac joints, evaluated the extent of the damage and immediately started me on a strong anti-inflammatory drug and Humira injections. Although I am only approaching my third injection, and still have to use heat, TENS and water therapy to control my pain, my pain is actually controllable for the first time in years. It is important to note that the diagnosis was made FROM THE SAME XRAYS THAT BOTH Ms. XXX AND Dr. XXX HAD ORDERED AND REVIEWED. All that was needed was a follow up MRI of my sacroiliac joints to visualize the ankylosing and make the proper diagnosis.
There are several concepts that I want to convey clearly with this letter. Because my experience has been that the XXX staff have some level of difficulty collating information into a “big picture”, I will structure it as simply as possible.
• HLA B27 is a gene that is diagnostic of nothing other than its’ own presence, and both scientific and anecdotal evidence indicate that a lack of elevations in inflammation markers do not preclude a diagnosis of AS.
• Current medical information is readily available that indicates ankylosing spondylitis is found in a greater population than traditionally thought. It is no longer considered a disease of primarily adolescent and young adult males. There is a significant population of women suffering from this condition across all age groups.
• Sacroiliitis is a dreadfully painful condition that is not usually found without a precipitating injury in the absence of a disease process
• The possibility of that disease process should be evaluated by a specialist. THAT, Ms. XXX, is what a rheumatologist will do for you.
• Pain causes an emotional response, necessitating that both the patient’s physical and mental status be evaluated and treated with empathy and support. Chronic, untreated pain of more than a year’s duration will change one’s personality so dramatically that the sufferer will be almost unrecognizable. Although your first failure is in letting a patient suffer that long, you exacerbate the failure by not referring them out when you are not treating them. For non-rheumatological problems, I strongly advise that you familiarize yourselves with the pain management specialists in your area and utilize the referral process.
• It is illegal and unethical to withhold a patient’s medical records because you are afraid of a lawsuit.

I hope that the presentation of this letter will precipitate some sort of continuing education for the physicians, nurse practitioners and office staff of XXX Family Practice. Please refer to spondylitis.org for updated information on the disease or reach out to any of the excellent rheumatologists in our area. Thank you for taking the time to consider my suggestions.

Sincerely,
Jennifer XXX
Cc NYS OPM
Dr. XXX
Dr. XXX
I will be writing some follow up posts in the future to share some things I do to help with my chronic pain, fatigue and insomnia. I’m also using some alternative therapies such as essential oils and relaxation techniques that I’ll review and share with you as time goes on. Thanks for hanging with me through that long letter!

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About jennifer@contentmentathome.com

♥ Christian wife, momma and keeper of the home. Blogging favorite recipes, home decorating, crafting and snippets of family life at contentmentathome.com, where we believe home should be your favorite place in the world. ♥
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One Response to My Ankylosing Spondylitis Journey

  1. Pingback: On Chronic Illness, Foreclosure and Moving On | Contentment at Home

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