Until recently I was a Game of Thrones holdout. A few years ago I inadvertently caught a scene where a man lures his mother into a kennel of rabid dogs for her to be eaten alive and I thought, “Mmm…pass. Hard pass.” I’m five seasons in now and can’t un-see what I’ve seen. I’m so depleted by the existence of a character like Ramsay Bolton that I’m left with two options: quit now — slightly more than halfway through the whole thing — or see it through to the end. Sound familiar?
Mayo. Mayo, Mayo, Mayo. In last month’s episode I was about to meet a bunch of new specialists and take a bunch of tests. We did so. An MRI, an EMG, a chest X-ray, a spine scan, a swallow test, a blood panel looking for 52 kinds of genetic myopathy markers, and finally an HMGCR antibody test. No new finds; everything that should be negative was negative or as expected. Two specialists at Mayo in Rochester also reviewed the samples taken from my 2013 muscle biopsy. Their assessment, “Diagnosis: 1. Myopathy, active and chronic, with minimal inflammatory reaction,” was in agreement with what Northwestern Memorial Hospital concluded six years ago.
I did learn that modern medicine has uncovered a lot more about polymyositis since my original biopsy. My new neurologist vernacular-shamed me for using that term because researchers have parsed “polymyositis” into a dozen or more subset diseases since I was first introduced to it. That last part of Mayo’s conclusion, “with minimal inflammatory reaction,” makes my case less typical. So there’s that.
My neurologist has suggested that we do a second biopsy next, this time of my tricep. A second procedure would rule out a “sampling issue” with the first one, but he acknowledged that it’s equally possible that we’ll learn nothing new.
While all of that was going on — the testing, the waiting, the ordering, the analyzing — I anchored myself in the AmpCoil. And things started to shift.
Symptoms I’ve never experienced started happening right after coiling sessions… and then they started popping up on their own without provocation from the coil (hives!). This seems to be the purpose of a PEMF device for chronic cases like mine: to align body parts to a healthy frequency over and over again until the body remembers how to do that on its own. Once I realized that I had transitioned onto this ideal trajectory with the coil, my grant was extended (thank you SO much, WFHF!!). You can dive into the details of my “shift” in part two of my self-driven case study here.
I’m not getting another biopsy right now because none of the experts who reviewed the first sample questioned its quality. With all of the other tests coming back okay (this isn’t a genetic issue, there’s no tumor on my spine, etc.), my decision five years ago to abandon the steroids and pursue alternative medicine has been vindicated. My sense of relief outweighs the frustration of there not being an obvious way out.
I’ve come too far and know too much to hit the brakes. I will finish working through the undetectable actors that are holding my muscles hostage; that is my promise. The coil, other alternative therapies, and God’s grace, will get me there. I’ve also got an appointment with a Mayo rheumatologist in September to see if that department has any new ideas.
As with any intense drama, Game of Thrones has its reprieves and one is named Brienne of Tarth. Her swordsmanship, fearlessness, and blatant defiance of traditional gender roles are undeniable. Accompanied by her sword named “Oathkeeper,” she will stop at nothing to do what she has promised to do. Brienne’s heroism is a welcome reminder that nothing can squelch the power of a determined woman… not even the strugglebus.