Well, I originally typed this out on Inspire.com, which is where I usually go to offer/receive support. I am a part of the EDS group there. It’s very lengthy, but it explains all of my journey up to late December 2014. I don’t want to link you to the original discussion, because there are 4 pages of replies. If you are a part of that group, my name is the same name it is on here! But basically, I had to convince everyone that I was ill. I did all the research that was put into getting diagnosed. It was a pretty grueling journey. I wish I could find the same strength I had only months ago and apply it to this situation.
"Let’s start off with saying that I am currently 13 years old. I was diagnosed with scoliosis in July 2013, POTS in September 2014, and EDS in October 2014. It wasn’t easy, let me tell you.
It all started, really, with scoliosis. The school nurse comes and examines us, and I get called down to her office a few months later and she says I need to get checked for scoliosis, and it is required by the State. So, imagine 11-year-old , 6th grade me, knowing full-well my mother would never take me to a doctor.
Around the same time, (think February 2013) I became close with my art teacher. This was the jumping off point for me and the world of EDS. I was considered to be good at art, and she noticed. Every day, during roll call, she would say, “Everton, by the trash can”. I’d wait there, and she would come over, lead me to her office, and we would talk. I briefly mentioned one day that my parents weren’t very supportive of my art, and something clicked with her. I still don’t know why.
One day, I was waiting by the trash can, and I turned both feet outwards in a ballerina pose. The art teacher noticed when she came over, and she immediately asked if I was double-jointed all over. I said I was. She asked if I have ever dislocated a joint before. I told her my shoulders and hips were common culprits. I had NO idea what she was getting at. She asked if I’d ever heard of EDS, I said no. As it turns out, she and her youngest son have it.
A few days later, I go to my PCP for the whole scoliosis thing. He does an exam, an x-Ray, and notices my left leg is longer than my right by about 3/4 of an inch. The x-Ray comes up positive for scoliosis, and he tells me he’s sending me to Children’s. Also, at that appointment, he said I have a malformation in my lumbar spine, where it didn’t fuse correctly, and it’s very cracked and unstable.
I begin researching EDS. It’s nauseating; it fit all too well. Even then, I had been struggling with chronic pain. I have been since I was 7, actually. I was unknowingly desperate for answers.
July the 2nd rolls around, and I go to my first Children’s Hospital visit. I am x-rayed, examined, etc. An older doctor comes in. Everyone claims he is the “scoliosis guru”. He told me to bend forward. I did. Crooked spine. (17 degree curve) He told me to bend back a bit, and he freaked out. Then, he got curious. He told me to go as low as I could. I did a backbend and then sat on my head with utter ease. I left the appointment frustrated however–no diagnosis of EDS.
I am in physical a therapy for six weeks to build up core strength. They recognize I am severely, severely hypermobile. At the end of the six weeks, they tell me that since my pain has gotten worse, they have no idea what to do for me. I slyly bring up the possibility of a connective tissue disorder, (I had just turned 12.) and the physical therapist tells my mother and I to get an appointment at a child development center. It never happened.
January 2nd, 2014. I go back to Children’s. There is no change in my curve. I bring up EDS, and the likelihood of it. Do you know what the doctor said? “Hypermobile children just learn to deal with the pain. There really is nothing we can do for them.” My mother was furious. No, not at the doctor. At ME. She was disgusted with me.
That whole year, I researched EDS. I still am in contact with the art teacher. I speak with her a lot. My mother is always angry, always screaming. The art teacher offers to talk to my mother. I refused. That January, I meet my keyboarding teacher. She also has HEDS. We don’t talk much about it, but I thought it was odd that in the same school building, two teachers had EDS.
February 2014. My mother schedules an appointment for my “horrible acne” with my PCP. Notice the quotation marks! I bring up EDS. I felt confident that I’d get a diagnosis or a referral. Of course, that did not happen. He took one look at me, messed with a few of my joints, and told me there was no way I had EDS. I was devastated. You all know the feeling. My mother didn’t talk to me for a week.
My art teacher resigns at the end of the school year. She had brought up the fact that us, the students, are never informed of what to do in a school shooting, and the administration told her to leave. I was so, so angry. But she supported me to the very end, and that’s what helped me.
In late May of that year, I joined Inspire. I was so desperate for anything, anything to allay the pain, physical and emotional. My health was in free fall, and it was beginning to get scary.
In July, I am landed in the ER with severe, persistent tachycardia. I knew, I just knew it was POTS. The doctor shrugged his shoulders and said it was MVP. I laid in my back for FOUR HOURS, and my heart rate would not lower. No testing was done. This is where things began to pick up some steam. My mother was now aware that I was having these problems. With her, my problems are not noticed until they’re too severe to be ignored. Often, the damage is already done.
It is the second week of school. I go to the nurse’s office, and my heart rate is up in the stratosphere. She thought I was on drugs because I was slurring and stumbling! But that visit was effective. A week later, I go to my PCP, and I am dreading it. I thought he’d blow me off like he did the time before, but I was pleasantly surprised. I am sent back to Children’s. He tells me there will be a lot of testing done. At that time, it was September 2nd, and my Children’s appointment was the 16th. Fourteen days, I thought. I knew I could make it.
But, one day, my appointment is moved up to the 11th. Odd. What I didn’t know then is that my PCP moved it up for me, somehow. I still don’t know how.
The 11th rolls around, and I’m hoping for an EDS diagnosis. The doctor is young this time. The medical student that was brought in to examine me treats me like an idiot. I did NOT appreciate that at all. The doctor did at first, but as we spoke, he began to gear up. I thought he was okay, but… He completely blew me off! No testing was done! A measly Holter monitor is what I’m given, along with a diagnosis of “Orthostatic intolerance” and advice to drink more water and eat more salt… just like I’d been doing for a YEAR.
The Holter monitor recorded 22 incidents of tachycardia in 24 hours. The cardiologist said it was fine, that it was nothing to worry about.
On the 16th of that month, when I was originally supposed to go to Children’s, I was in the nurse’s office AGAIN. My heart rate would not go down, my blood pressure is all over the place. The school nurse wants me to go to the ER. My mother calls my PCP’s office, and his nurse says to schedule another appointment at Children’s, or to go to their ER. I flat-out REFUSE. Soon enough, I am in my PCP’s exam room, and we talk, and I am given a diagnosis of POTS, which is what I had “hoped” for. I am also given a script for Propranolol. Once he found out I was not tested for anything at Children’s, he was livid. That was the day I realized that he is a good man.
I go back 2 weeks later, so he can see how I’m doing with my beta blockers. He ups the dose. I hand him a note, asking if he could send my mother out of the room. He complies. I give him a short few papers on EDS, and how POTS and EDS are closely linked. I ask him for a referral to the Connective Tissue Clinic at my local Children’s Hospital, too. He is stunned that I found a link. I got the referral!
Then, 6 weeks later, I was sitting in a geneticist’s exam room. I was nervous as all hell. The geneticist was a little old man, but mentally sharp. I was examined, my family history taken down, and sure enough, he said, “You have a very clear case of EDS”. I THEN got the referral to the Connective Tissue Clinic. Like I knew would happen, I felt nothing. Empty. The battle was over, right?
Of course, it wasn’t. During this time, I was struggling with neurological symptoms. Late December, I was back at my PCP’s, and I tell him of my symptoms. I suspected it was Chiari, but I didn’t say that. He suspected it was Chiari. His mini neuro exam turned him from cool and collected to nervous and bewildered. He immediately ordered me an MRI. It came back clean, and I am currently waiting for further testing so maybe I can find relief."
