The Journey Toward My Primary Progressive MS Diagnosis
When I turned 50 in 2013, I blew out the candles, and bam! I was diagnosed with type 2 diabetes. I started seeing an endocrinologist and a neurologist, taking daily diabetic medications, and testing my blood sugar every day. At that point, I was not physically disabled in any way and continued my day-to-day routine.
I own a retail farm, a greenhouse, and a nursery where I grow flowers, vegetables, and perennials for people’s gardens. It is very physical, challenging work. Mother Nature and Father Time are demanding and unpredictable bosses.
About six years ago, I started noticing that my balance was off, my endurance was low, and my focus wasn’t as sharp. I attributed these changes to getting older, wearing down, and my diabetes possibly worsening. I began complaining of back and leg problems. Maybe it’s neuropathy, I wondered? Then erectile dysfunction paid me a visit.
One day, I picked up a concrete block with my left hand, something I’d done a million times, only for it to slip out. I figured it must have been my grip. I tried picking it up again, but it fell out of my hand. What the heck? Finally, I picked up the block successfully with my right hand, but the event was puzzling.
Soon I started having difficulty handling the heat. Summer temperatures regularly reach the upper 90s here in New Jersey, and it can be 120 F in the greenhouses. I needed more breaks, more fluids, and more time in the shade. By the end of each day, I was completely exhausted and drained.
During visits with my primary care doctor, I would talk about my diabetes and bring up the strange symptoms I was experiencing. They weren’t that severe at the time, so my doctor and I quickly dismissed them, assuming I was getting older (I was 53 at that point) or experiencing complications of diabetes. I was in relatively good shape overall, so I was advised not to worry.
But as time went on, my symptoms worsened. I was having greater difficulty walking, experiencing more weakness, and tripping all the time. I tripped over the smallest things — rocks, wood, a weed barrier, a garden hose. Hoses are everywhere in a greenhouse, so I fell often.
I was having more trouble lifting and holding things with my left hand. I could no longer load the truck or hold a screwdriver, wrench, hammer, or cordless drill. I’d built my place 30 years earlier and done everything myself — carpentry, nuts and bolts, electrical, plumbing, and gas. But now I couldn’t do a smidgen of that, and to top it all off, I was having trouble taking a leak. What was going on?
Another year went by and I returned to my primary care doctor. I asked him why I couldn’t take a leak, and my doc recommended I see a urologist, as it could be a bladder problem. But the urologist didn’t have an explanation because all of my test results looked good. I also saw my endocrinologist, who said these strange symptoms had nothing to do with diabetes.
By October 2020, my symptoms had increased in severity. I couldn’t stand for more than 15 minutes and I was hunched over. I became convinced that I had a lower back problem that would require surgery. I decided not to grow a crop of Christmas poinsettias that year; instead, I closed down the greenhouse for the winter to figure out what was going on with me.
My next stop was an orthopedist who ordered an MRI scan of my lower back. The results showed I had degenerative disk disease in my L5-S1 vertebrae. I was told to do physical therapy for four weeks and then check back with my doctor. But after those four weeks, I was worse off than when I started. Some days I had to be carried to the car.
After reviewing the physical therapist’s analysis, my orthopedist thought my leg weakness was resulting from an issue in my cervical spine, not my lumbar area. He ordered another MRI, this time of my neck.
Boom! This scan gave us the first clues. My orthopedist told me there was some strange shading on my cervical spine, which he believed could be a sign of multiple sclerosis. He told me to see a neurologist immediately.
The neurologist deemed the cervical MRI inconclusive. She ordered 3D MRIs with contrast, focusing on my brain and my cervical and thoracic spine.
The results? Textbook multiple sclerosis. The neurologist did not opine on which type I had, but referred me to the gurus at the local MS clinic. After a three-hour consultation with a physical therapist, a registered nurse, and the head doctor, I was finally diagnosed with primary progressive MS.
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