The path to a definitive diagnosis of EDS is a highly personal one. Each of us has a unique story to tell, filled with both heart aches, and triumphs. I would like to share with you my journey on the long road to find answers.
For me, as a child of the seventies, none of the doctors in my pissant, backwards, steel town, had even heard of Ehlers-Danlos. Of course neither had my parents. It seems as if I always knew that my joints were different, that my body could do things other kids couldn’t. It started when I was quite young, I believe I was three when the doctors put me in hard, metal braces with special shoes, from my ankles to my waist.(think Forrest Gump) There were multiple reasons given for the braces… hip dysplasia and spontaneous subluxations of the hips and knees. Ankles that were weak, etc… I wore those things for two and a half years.
I can’t remember a time when I couldn’t spontaneously sublux whatever joint I wanted. I delighted in freaking out my classmates by pulling my shoulders out of socket, and then putting my arms behind my back, but in the opposite direction. I was pretty athletic, and I sprained my wrists, knees and ankles more times than I can count. The doctors would be astounded at the enormity of the swelling in my sprained joints, and would insist that they absolutely *had to be* broken… Nope, always sprained. They told my parents that my joints were just “wonky”.
In addition to all of the problems with my joints, I also had numerous issues with my bladder and kidneys. Most notably, the urethra tube between my kidneys and bladder wouldn’t stay open, causing urine to be trapped in the kidneys, causing massive infections. The urologist would stretch it back open only for it to close up again a few months later. I spent so much of my childhood in the pediatric wing of our local hospital, once staying for almost a month! I had my favorite nurses, I even learned how to ride my IV pole in the hallways. But still, not one of my doctors put the puzzle pieces together.
I grew up, I joined the Navy, and even they thought something was wrong with me (I developed my postural tachycardia while in the Navy) Forever passing out whilst standing formation, waking up in medical, hooked to an IV, getting electrolytes. They even referred me to a rheumatologist, but they came up empty.
Then came my first shoulder surgery, my right one, it just would not stay in place. An open procedure was performed, leaving me with hellacious pain, and a scar from the edge of my neck, all across my shoulder blade. Still, no doctor caught on.
An accident in 1999 resulted in a posterior dislocation of my other shoulder, I’ll spare you the details, but after five separate surgeries on my left shoulder, it still subluxes if I dare pick up a gallon of milk with my left arm. Still, no bells went off in my doctor’s brains.
Another accident, more surgeries, tachycardia, degenerative disc disease, SI joint dysfunction, trochanteric pain syndrome, gastro, and the list went on and on.
Until one day, at forty-seven years old, I sat in my primary care doc’s office.
Me “My knee is bugging me, especially when it slides sideways out of place”
Him “Knees don’t slide sideways out of place ”
Me “well… mine do”
*proceed to demonstrate*
Him. *shudders*
“First of all, never do that again. And second, you are going to see a rheumatologist, because suddenly all of your problems make sense.”
The rest is history. Saw the rheumatologist, she confirmed diagnosis, and suddenly I’m a Zebra. And I have never felt so vindicated in my entire life.
I wanted to tell all of my childhood doctors, and my parents, and even my teachers
SEE????? I was not, and I am not, a hypochondriac.
Wow, that took a lot to write, but I feel good for getting it out there.
Thanks for *listening* 😁
~Tammy
One thought on “The Journey to Diagnosis”
I like your sense of humor about this! Seriously tho cred for making the doctor shudder.