Published: 17/02/2023 Tags: Stories

I now know what to keep watch for when it comes to my boys

I’m 27, a mom of two, and my story starts four years ago. I went to my primary doctor about having seizures and passing out. I saw a neurologist who did a bunch of tests and they told me I was faking them, and it was just my anxiety. I saw a cardiologist who had me on a heart monitor for a month, never tested for POTS or anything else, still no answers and again was told I was faking it.

Slowly more and more symptoms popped up – I ended up having GI issues and a partial hysterectomy due to other issues. I experienced swelling in all my joints and much more. My body randomly twitches, my hands lock in place, and at times it’s hard to function, let alone pick my boys up.

It took four years to hear back from a rheumatologist, even though my primary doctor sent in referrals and contacted them many times. When I went in, they tested for EDS and did a bunch of blood work for other things. I got diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). They then sent me to a cardiologist who told me I have POTS and is going to do an echocardiogram.

Just recently I drove three hours away to see a doctor to help me with my pain from hEDS. She also diagnosed me with mast cell disease as well. Not only do I have answers finally for myself, but by getting the help I now know what to keep watch for when it comes to my boys.

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