So, I recently went to see a specialist, a neurologist to be exact about my new symptoms I’ve been experiencing. Muscle weakness, numbness, tingling, early fatigue. It turns out that doctors aren’t always right.
She explained to me that an MRI that was taken in 2011 was abnormal. The doctor had no note on it, it was noted as unremarkable. I have a degenerative disease because my cervical spine has an abnormal curvature. In 2011, I have shown signs of wear and tear because of the way I was born. This means I will experience arthritis at an earlier age than others. Now, if these results were discussed with me, I could have known the reasons of my symptoms.
I have always been spastic. Meaning, I have high muscle tone, my muscles contract at a higher rate. That makes me clumsy, easier to trip or fall, drop things etc. The neurologist just prescribed me a medication to ease the spasticity in my muscles. I was diagnosed with spastic cerebral palsy as a toddler and it is only now have I ever heard of this medication. This specific neurologist performed a nerve conduction study on my dominant arm in 2012, which of course turned out normal. She brought up a question, “Is that why they say you have fibromyalgia?” She was referring to my pain and symptoms. She explained to me how at my age, this needs to be connected to an existing problem which I’ve known I had since I was born.
My brain was wired differently, and I learned motor functions at a different rate.
She also said doctors tend to say fibromyalgia when they cannot explain the reasons for pain in specific areas. Now, I had this fibromyalgia disease for 6 years and now… how do I adapt to that?
I know I’ve always had a problem with my spine. I do still need an MRI for thoracic and lumbar since yes, I do have bony spina bifida.
I’m sorry if you do not know these terms but growing up I was really confused as doctors would throw diagnosis after diagnosis at me. But, my point is doctors aren’t always right. At a certain point they can be. I’ve seen specialists since I was a toddler. There’s always something they’ve missed. The best thing you can do is follow up with your heath, make appointments, ask questions, find a doctor who will find the root of your problem and become knowledgeable. Do the research. It is the only thing you can do for yourself to help learn what’s going on with your body.
All in all, I’m pretty content with my healthcare but surprisingly, the one who has helped me the most is a physician assistant. I think that is why I’ve always wanted to be in the medical field. I was surrounded by doctors at such an early age and the hospital has become a second home to me.
After you find out all the things that can go wrong, your life becomes less about living and more about waiting.