To My Primary Care Physician....
When I brought up EDS with you last February, and you kept trying to convince me I didn’t have it, even though the symptoms were right there, I was so angry. You told me I’d never have to worry about the problems EDSers do. I was heartbroken, miserable. Because, yet again, I had failed to receive my diagnosis.
In September of this year, I sheepishly came back. My heart was acting up. You were thorough, and that was good. You listened to me, and you even asked about my joints and how life was going emotionally.
Exactly two weeks later, when I was rushed to your office in the middle of a school day, because my heart rate wouldn’t go below 130, you came to the right diagnosis—Postural Orthostatic Tachycardia Syndrome, like I’d been trying to get doctors to say ever since I was in the ER in July of 2014. In fact, a doctor at Children’s Hospital failed to diagnose me correctly, and you did. I regained my faith in you.
Fast forward two weeks, and I’m back again. I bring up EDS again, and you listen. You send me to a geneticist, and I’m diagnosed.
A week after the geneticist appointment, I’m back to your office. And you looked through my EDS book, and you told me yet again I need to become a doctor.
Then, this Monday, I received horrible news from you. I couldn’t say I didn’t expect it. You told me I likely had Chiari Malformation, and, at the very best, my brain is pressing against my cranial nerves, because my balance is bad. And, at the worst, I have a syrinx, a collection of CSF in my spinal cord that will eventually destroy the middle of my spinal cord.
And you got me into an MRI so quickly, because you understood the urgency of it all. You’re trying to rush my Connective Tissue Clinic appointment at Children’s, which is this May, because you truly do believe I need to see someone. And you know I’m only getting worse, unlike anyone else in my life. You’re trying to salvage what I have left.
Tomorrow, I have an MRI. I’m scared, and I know the outcome will likely not be good. But I can only thank you for your perseverance in my case and your kind words. They’ve gotten me through these hellish months.