What a Difference an Expert Makes
As a kid, being “double-jointed” was my party trick. I could twist and bend in ways that amazed people, it even gave me an edge as a high school cheerleader. But around fifteen, things started to change. My jaw began to pop, and soon my neck and back ached constantly. Then my left arm started going numb and even turning blue.
By twenty, I was sitting in a gastroenterologist’s office for unexplained stomach issues. A dentist at the Cleveland Clinic diagnosed me with TMJ and suggested taking a rib to build me a new jaw based solely on an office exam. This was just before MRIs became common. I declined, instinctively.
In the years that followed, I was never offered real treatment. Just advice: try yoga, don’t think about it, maybe biofeedback. No one ordered imaging. No one looked deeper. I was simply given a name temporomandibular joint syndrome and told to live with it.
I always found that strange. If someone’s knee were permanently out of its socket, no one would recommend biofeedback as the solution without running tests. But for the jaw, somehow, that was acceptable.
Now, at 65, my discs have disintegrated. My jawbone has flattened and no longer moves properly. A liquid diet is often my best friend. Over the years, I’ve also developed trigeminal neuralgia, thoracic outlet syndrome, and IBS. I kept saying the same thing to every doctor: there has to be one underlying cause. I just need to find the person who can see it.
About ten years ago, during a routine checkup, my doctor ran a vitamin D test. He predicted it would be low. Instead, it came back toxic too high to measure. I wasn’t taking supplements beyond a multivitamin, but no one believed me. Every doctor after insisted I must be overdosing on vitamin D, though no one ever asked why. Because I’m allergic to chemical sunscreens, I’ve avoided the sun most of my life. It made no sense.
Then earlier this year, I was diagnosed with severe osteoporosis. My primary care doctor ran extensive tests, even checking for cancer. He also checked my vitamin D. Thankfully, everything came back negative. D was still at toxic levels. He admitted he didn’t know what was wrong, but I appreciated his honesty and the fact that he cared enough to look.
Still, I knew something connected all these pieces. So, I started researching vitamin D metabolism and leading endocrinologists. One name kept appearing: Dr. Michael Holick.
I emailed him, and to my surprise, got an appointment. Within three minutes of our meeting, he unraveled fifty years of medical confusion. My high vitamin D wasn’t from supplements; it was a genetic 24-hydroxylase deficiency. The severe osteoporosis, bone pain, TMJ, IBS, and joint problems all traced back to Ehlers-Danlos Syndrome, also genetic.
For the first time, everything made sense. And not only did Dr. Holick have answers he had a plan.
After decades of being dismissed, told to “relax,” or offered yoga instead of diagnosis, I finally felt seen.
What a difference an expert makes.
