7 Years in No Diagnosis Land, Part 2
In part 1 of No Diagnosis Land, I told you how I started to have symptoms in different parts of my body. During these years, between 2007 and 2013, I saw several doctors and therapists, and nobody mentioned that my symptoms could be linked to a long-term condition. My journey is not atypical, but rather representative of the delay to reach a diagnosis that people living with AxSpa can experience.
A wrong diagnosis
At the end of 2013, I finally got to see a rheumatologist, who gave me a wrong diagnosis. I was told I had hypermobility in my joints which I knew it was not the case. I did not need to be expert in my condition to know that, I just knew by living with my symptoms, and not being particularly flexible for my entire life, that I was not hypermobile. I was disappointed by this first appointment, and I felt lost when those flares happened.
I was then desperate as I was in constant pain in my neck and feet, I felt very tired and started to lose my confidence. I had a poor concentration at work, and my sleep quality was impacted as well. I felt unfit with the limited exercise I could do. I lost my stamina and was not able to stand for too long. Overall it was very hard to live this way and even harder not knowing the cause of it or the name for it.
I felt hopeless, and asked for help
After experiencing various symptoms for years, facing a misdiagnosis felt a bit like going back to square one. Feeling helpless and desperate, I decided to have a different approach and stop relying only on the health system to find answers. So, I used my connections in my home country, with dear old friends who are now medical doctors. In Spring 2014 I went to see a renowned doctor in my hometown in France (Bordeaux) recommended by my friends. They met him or heard of him during their studies, and they were trusting his experience and knowledge to shed light on my diagnosis. My friends’ suggestions led to a breakthrough in my journey as a patient and I cannot thank them enough for that!
On their advice, I sent an email to that doctor before my appointment to explain to him what was going on for me. One of my friends followed that up with an email as well to set the scene for my consultation. He was not a rheumatologist, but based on what he already knew, he had invited a colleague rheumatologist to attend the consultation.
Finally, some answers
Somehow, he knew before meeting me that I had some form of rheumatic condition. In one appointment, he told me that most likely I had AS, and he sent me for a genetic test for HLA-B27, which came back negative. He also told me that biologics were potentially my best option for treatment. That was in Spring 2014 and seven years after my first symptom, I started to get some answers.
In part 3, I tell you how I carried on collecting information and worked with healthcare professionals towards a confirmed diagnosis.
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