Excerpt

In an attempt to relax my muscles, I began getting into the hot shower.  This, in addition to hot baths, became my new method of making the spasms dissipate.  Despite all this, the gradual escalation continued and it was alarming.  “Okay, maybe I’m doing too much,” I said to myself.  “My body is clearly exhausted and overworked.  I need rest.” I made it a point to be intentional about taking it easy.  Then, one day, while I was in the shower, the spasms came on.

It was then that I began to wonder if I was dealing with a more serious medical issue. I went to my doctor and explained what I was experiencing.  He ran some tests.  When the tests came back my bloodwork was pristine.  Everything was normal!  That’s when I became really concerned because while there appeared to be nothing wrong, the spasms were getting progressively worse.

My doctor didn’t have a diagnosis for me.  He recommended that I visit a specialist at a pain clinic.  The day I went to the pain clinic for intervention and treatment, I was in the middle of explaining my symptoms to the doctor when all of a sudden, spasms erupted all over my body.  It scared the doctor.  He and the medical staff had never seen anything like it.  They began injecting me with what is called Trigger Point Injections (TPI, saline, and corticosteroid in an attempt to calm my physical response down.  I had never experienced anything so drastic in my entire life.  And yet, despite more tests, the doctor couldn’t tell me what was wrong. 

The specialists, too, were confounded.  All they could do was try and help me manage the excruciating pain that accompanied the episodes.   TPI worked, momentarily. But by the time I returned home, the spasms were again starting to erupt. Since the hot showers, baths, sauna, and all the other natural methods I’d taken to alleviate the spasms stopped working, the pain specialist prescribed Baclofen. Baclofen is a muscle relaxant and antispastic. It’s effective for the alleviation of signs and symptoms of spasticity resulting from multiple sclerosis, flexor spasms, and muscular rigidity.  Baclofen helped, until the spasms began to break through the Baclofen, rendering it ineffective.

Around 2015, I switched primary care doctors and was referred to another pain specialist.  This doctor started me on a series of new treatments, but not only were they ineffective, but every time they’d do an intervention, the spasms seemed to worsen. One afternoon, the doctor, who was aware of my healthcare background, sat me down.  “Dr. Scott, look,” he said.  “I’d like to talk to you about something.  Have you ever heard of a disease called Stiff Person Syndrome?” “Stiff Person Syndrome?” I repeated.  “No, I haven’t.” “I would like for you to go home and look it up.  Then, you and I need to talk,” he said. I left his office, went down to the parking lot, and sat in the car.  I decided to look up Stiff Person Syndrome right then and there.

When I saw the presentation of the syndrome and read up on its description and symptoms, I was looking at myself.  Up to this point, the medical professionals had thought that perhaps it was fibromyalgia or some other chronic arthritic condition I had since I also suffered from arthritis.  But witnessing video testimonials and seeing the nature of the spasms individuals with Stiff Person Syndrome were experiencing―specifically their onset, intensity, and the pain that accompanied them―I knew right away that I had my answer.  “My God!” I said aloud. “This is exactly what it is!” After nearly a decade and a half of seeing specialists producing inconclusive and inaccurate diagnoses, I finally had my answer. The question now was, what to do about it?