7 Years in No Diagnosis Land, Part 3: Answers
In part 1, I told you how I experienced various symptoms for years without getting some answers. In part 2, I finally made progress once I decided to get involved and take actions to find my diagnosis. Here is the end of the saga!
A swollen collarbone
My symptoms started in 2007, and I got told for the first time by a healthcare professional that I may have AS in 2014. That was thanks to my involvement and the great help of dear friends of mine. That same year, in summer 2014, one of these friends who is a radiologist in Switzerland offered me to do an MRI of my spine to see whether we could see any inflammation and the potential damage done there. That friend confessed to me after hearing about my potential diagnosis of AxSpa that she had noticed some months ago, that my collar bone on the right side (again, it seems I get symptoms only on that side of my body!?) was swollen, and it could be a sign of some inflammation. So, it was a hint for her and she was not surprised of that potential diagnosis.
I was very grateful for her care, particularly in the MRI machine having to deal with me, the classic claustrophobic patient who can’t stand lying down still in this loud scary scanner. In fact, knowing how difficult it was for me to do it, she had booked the biggest machine she had with air conditioning to keep me cool and relaxed! Despite my (micro)movements during the scan, the radiologists could not clearly see sign of inflammation in my sacroiliac joints or along the spine. So, it was not a very conclusive test, but it was useful to have it done.
Back to London
With all this information, I went back to London and used again my contact to see another rheumatologist. In the UK, you are entitled to a second opinion from a specialist when you are not satisfied with your first referral. So, I asked my GP to be referred to another rheumatologist, in the department of my choice. That time, I used my professional connections to get a recommendation for a rheumatology department.
I was then working at King’s College London with a hospital on the university campus. I asked my supervisor at work if he knew anyone I should be seeing in rheumatology. He asked a few colleagues and told me there was a good professor at the rheumatology service in the hospital on the campus. This is where I went for my second opinion. There I was diagnosed with a form of seronegative inflammatory arthritis to start with. The diagnosis was not specific yet but progress was made. I was prescribed my first medication to target the inflammation in my body and started to learn how to monitor and manage my condition.
This diagnosis was then changed that same year into spondyloarthropathy, before being called seronegative spondyloarthritis in 2015. That was the end of the diagnosis quest!
That story shows the role that I, my friends, and my contacts have played in my diagnosis, and I am very grateful to all the help and support I got along the way. Overall, I can say that it took a good seven years to diagnose me with AxSpa. The average time in the UK to get a diagnosis of AxSpa is 8.5 years and unfortunately, I am not far off that average. Since I have been diagnosed, I am amazed by the level of care and support I have received, for the treatment and self-management of my condition. So that first step of getting a timely diagnosis is key so we can all start managing our condition as soon as possible.
Can you tell when a flare is coming?