A One-In-A-Million Diagnosis

In 2017, a rheumatologist suggested my symptoms sounded an awful lot like Stiff Person Syndrome and referred me to a new neurologist, who agreed. 

Thus, began a two-year journey of trying to manage an incurable disease. They first tried monthly IVIG treatments. That’s Intravenous Immunoglobulin. It takes about 1,000 plasma donors for one IVIG treatment, which is designed to help the patient’s immune system stop attacking itself. Treatments weren’t easy for me. It took steroids and a good three to four days off work, in pain to manage through – every month. It helped for a while and then, stopped working.


They next tried a medication called Rituxan. Unfortunately, I had a terrible allergic reaction and ended up in the emergency room. It took about six months to find a new treatment option.

2019 turned out to be one of the worst years of my life (well, had I only known what was yet to come). I checked into the hospital for 11 days – and at last, opened up and shared my story more widely, hoping that explaining what I was enduring would help family, friends and others better understand why I was somewhat off-the-radar. During that 11 days, I went through five rounds of plasmapheresis. This basically removes the blood, cleans it and returns it into the body – hopefully, with the bad antibodies that might be contributing to my health issues removed from the plasma. Despite a lot of hope (and cost), it didn’t work.


I left the hospital in a wheelchair crying so hard, I was literally wailing. I couldn’t believe this treatment – this huge financial and emotional investment – failed. I was devastated.

While the holes in my neck healed, I rested and reflected at home with the help of a new companion. Our family adopted a mini Aussie-Doodle – beautiful Millie, who has brought me joy even on the worst of days this past two years. My body bears the scars from the allergic reaction, the plasmapheresis and various tests over the years… but the scars on my spirit have been even more penetrating and painful.

Published by Naomi Binkley

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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