After the unexpected emergency room stay for a stomach virus, there were lots of follow-ups with my primary care doctor and my neurologist in Denver.
We decided to biopsy one of my most chronically painful muscles – my quad. It’s one test that we hadn’t done but because the pain in my upper legs and upper arms continues to worsen every day, I felt strongly it was time.
I remember talking with various members of my medical team about the Functional Neurological Disorder (FND) diagnosis. Three separate specialists said that FND is a result – not a cause. It didn’t explain why this was happening to me. Some were convinced it was still Stiff Person Syndrome. You see the Mayo Clinic ruled that out because they said the two times the labs came back positive for Glutamic Acid Decarboxylase (GAD65) Autoantibodies – weren’t confirmation enough because I was on IVIG (Intravenous immunoglobulin) treatment at the time. Keep in mind, it takes serum donations from about 1,000 people to produce one round of IVIG. My first positive was 502 (with normal being below five) and the second, 60. But I digress…
Many also asked if the Mayo BeST Clinic helped. It helped with the fluidity of my movements for sure… not a bit with the pain.
A lot of people have questioned why I continue to so fiercely pursue a correct diagnosis. Why spend the money, the time, invest the hope?
For me, it’s a matter of how to fight an enemy when I don’t know who (or what) the enemy is.
When you have an invisible illness or hidden disability, you are judged. It’s often is thought that it’s just in your head. Even I have questioned over the years if I was living my actual reality. For me, a concrete diagnosis would bring validation to the struggle, something you can try to fight, something you can explain to those who ask.
A mama, wife, Coloradan, storyteller, entrepreneur with a once-hidden illness - now a progressive and painful disability - ready to share my story after a career of telling those of others as a video production company owner.
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