Posted July 14, 2018

by Spencer R.

It all started in first grade when my ankles hurt too much to play with the other kids at recess. The pain only got worse, and I was eventually forced to limp around all the time. I went to the doctor, who said that my ankle was sprained, and gave me a brace.

After months of wearing the brace, nothing changed. I went to a different doctor, one that specialized in feet and ankles. I had X-rays done, but nothing showed up. He told me I had tendonitis, and I should wear a different brace. Again, nothing changed, but now my knees hurt too. My mom didn’t think much of this and told me it was just growing pain. A year went by, and my knees and ankles were still horrible. I was wearing ankle and knee braces to help stabilize. I went back to my pediatrician, who sent me to physical therapy.

I did physical therapy twice a day for a year, but the exercises they gave me didn’t seem to help at all. I was still wearing braces, and my physical therapist was now taping me. Of course, now my hips, elbows, wrists, and shoulders were added into the mix, as well as pretty severe POTS. I was limping around, in pain all the time, passing out and collapsing due to POTS. My pediatrician decided the PT wasn’t working, so I stopped going.

At this point, he was absolutely stumped, so he began sending me to specialists left and right. Neurologists, rheumatologists, cardiologists, dermatologists (this one was because he didn’t know where my livedo reticularis came from), etc. I was going to so many doctors, but none of them knew what was wrong with me. One particular rheumatologist told me that I had “benign hypermobile joint syndrome”, which I ended up believing for a few years.

Still unsure of where the POTS was coming from, although at the time they hadn’t figured out it was POTS yet, I had an EEG, countless EKGs, wore a heart monitor for a few days, and had an echocardiogram and a stress test. They finally figured out that I have mitral valve prolapse with regurgitation and POTS. The MVP was only moderate, so I was put on medication to help.

On April 28, 2017, (in 8th grade, yes it took 8 years for this) I went to a geneticist. This was the day that I was finally diagnosed with EDS. I started going to a pediatric pain clinic, where I was directed to a physical therapist who specializes in EDS and started a bunch of new medications.

Not long after, I started having a lot of trouble peeing. It would take me 20-30 minutes just to pee. It progressively got worse and worse, and I would end up crying because it hurt so badly to have a full bladder but unable to go. I went to a urologist, who thought it was caused by constipation, so he put me on laxatives. After this didn’t work and I was still having a ton of trouble going, I had a urodynamic test. This may have been one of the most traumatizing days of my life, so I’m not going to talk about many details of this day.

After the test, we talked to the neurologist who was helping perform the test, and he said it was probably tethered cord syndrome. I had a full spine MRI, which came back negative. I talked to one of my absolute best friends, who also happens to have Ehlers-Danlos, and has had tethered cord surgery, and she told me about her neurosurgeon who specializes in tethered cord in EDS patients. She looked at the MRI and scheduled an appointment with us. It was decided that I did, in fact, have a tethered spinal cord, so I had surgery to fix it on August 16, 2017. I spent a week in the hospital after, and a while recovering.

As of right now, I’m glad that, even after 8 years, I finally got my diagnosis. I still have a lot of problems day-to-day, but I’m working as hard as I can to manage my symptoms.

Another thing I wanted to say, is that after I was diagnosed in 8th grade, I started making handmade EDS awareness bracelets, and selling them to people in my school. By the end of the school year, I made around $500. I plan to raise more money in the future and donate it all to the Ehlers-Danlos Society. Thank you for reading my story. I hope you have a dazzling day!


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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