I was one of those cases that was vague and multisystemic enough to require a lot of “ruling out” before I got going towards a diagnosis. Eventually I would, in fact, end up with multiple diagnoses, which would explain a lot about why I was so difficult to diagnose based on what my symptoms were telling me and my doctors.
There was a lot of stabilization of symptoms that had to happen before even the fuzziest of pictures of my illness could be seen. The surgeries were part of that. Whatever it was, my illness wasn’t improving as I recovered from surgery, which meant that the surgeries themselves had not fixed the bigger problem.
The next part of that was stabilizing my iron and vitamin D deficiencies, which were both contributing to pain and fatigue. My vitamin D, it turned out, was so low that I was having problems with my parathyroid, which I saw an endocrinologist about.
When getting those deficiencies dealt with didn’t resolve my problems (though I certainly did feel better than before), I was sent for an MRI to check for Multiple Sclerosis. My MRI came back negative, so I was referred to a rheumatologist, where I was stuck for about a year with standing lab orders trying to catch antibodies floating around in my blood on my worst days that might indicate something like Lupus or an Unspecified Connective Tissue Disease. Nothing showed up.
It was the rheumatologist who suggested that, with my symptom cluster, it sounded like I might have AIDS. She asked if I’d been tested for HIV (I had) and whether I’d agree to be tested again (PLEASE test me again).
The only diagnosis I left the rheumatologist with was Benign Joint Hypermobility Syndrome, which was the explanation I was given for my joint pain and stiffness, but did not account for many of my other symptoms.
I continued to decline, having more and more days when I couldn’t get out of bed. When I could get out of bed, I had headaches and dizziness that made riding the bus impossible even with motion sickness medicine. I had periods of facial flushing that were alarming to my friends and family, but were not accompanied by a fever. Glands in my throat and behind my ears swelled and contracted. I was regularly nauseated and it hurt my eyes to look at my computer or read a book.
I was told that I may never know what was wrong with me, and that I should focus on symptom management to the best of my ability and work on adjusting to my limitations. It was suggested more than once that my symptoms were simply a physical manifestation of my anxiety. That started to make more and more sense after a while- I certainly was anxious to know what was the matter. Being ill and not knowing with what or anything about how to care for myself was pretty terrifying. It was also depressing not being able to do so many of the things I enjoyed or was used to participating in. As I struggled to keep up with my life, I began to feel like I was watching it drift past me, leaving me behind.
Years of illness and doctors and tests had gone by and all I knew was what I didn’t have. I started to work hard at accepting that I really might never know, and to find a way to live with the unpredictability of my body, all while constantly waiting for the other shoe to drop.