- CASE FILE
A case file created by a doctor in hopes to help her mother. Originally diagnosed as polymyositis, we’ve faced a problem: it’s not genetic.
ABOUT THIS CASE FILE
Five years ago, my mother boarded an airplane to Las Vegas, Nevada. Her left leg began to tingle and spasm, and she was losing feeling in her toes. She shrugged it off, neuropathy she supposed (as her father had it), and continued on dealing with it: she’ll just make an appointment with her doctor for when she gets back. A seemingly routine flight, she was in no preparation for what she was about to face. Upon returning to Michigan, she wandered from her primary care physician to a rheumatologist to a neurologist, all the while believing neuropathy was to blame for the tingling. Sure enough, it was, but a muscle biopsy welcomed an additional problem. “Your CPKs are above 1,000,” the doctor spoke. “They should be under 100... what we’re looking at here is polymyositis”. Ok, sure - we’ve recognized the name before: explained to us as a degenerative muscle disease, my grandmother (her mother) battled it with heavy doses of steroids and a plethora of pill bottles. It’s a battle she won, but not without some scars - the damage to her muscles would never heal. “So we’ll do what we have to do,” my father bellowed, curt and almost dismissive. This was just a speed bump that would go away eventually, and we as a family were all hopeful that an end was closer than not. Unfortunately, now in 2019, the end seems to be getting further and further. I’ve sat with my mother as she endured injectable gels, blood infusions, steroids, and even chemotherapy to try to halt her muscles from deteriorating any further but to no avail: her CPK levels now hovering above 6,000 and her ability to function slowly disappearing. As her current neurologist massages his temples in a cocktail of disbelief and frustration, we’ve since visited another neurologist for a second opinion. “You said your mother had Polymyositis?” He rubs his chin. “But polymyositis isn’t genetic... have you entertained the possibility that it could be something else?” It’s as if you want to smash your head against the wall... Of course we’ve thought it could be something else! We’ve WISHED it could be something else! Another immune disease, a lack of exercise, not eating enough fruits and veggies... Something that has a little magic wand that makes it all go away and then some. But despite the second opinion, we’re still at a standstill with no visible path towards a different answer. As hopeful as I was, my fear of losing my mother continues to grow and the grief I face watching her struggle to accomplish the things we take for granted nearly eats me alive. If I could give this women the world, I would; but for now, I just want to find her a cure so she can walk alongside me again.