Things I Didn't Expect Would Happen on My MS Journey
When I had my first MS attack in late 1998, it would be a month before one of the many health care professionals I visited mentioned the possibility of multiple sclerosis. All I knew was that after developing a severe cold/upper respiratory virus, my left side suddenly became numb and weak. I could barely drag myself across a room. My left hand was so weak my mother had to cut my meat for me.
A frightening experience
That was frightening in itself. More frightening still was the callous, dismissive, sometimes downright cynical attitude health professionals took with me, a stranger, about whom they knew nothing yet instantly accused of having panic attacks or depression. That was my first surprise, and the second one followed quickly on its heels. I stood my ground in the face of a bewilderingly irrational, sexist attitude towards women, judgments that came, I’m sad to say, from women as much as from men.
Ironically, the first specialist who took me in earnest and put me through testing was a 65-year-old male neurologist. My worst critic had been a 30-year-old female primary care doc who used my appointment time to tell me, a sick, 41-year-old woman, how unreliable and hysterical women are and should not be believed for one lousy minute. That was hard for me to process since I’d never heard that before from another woman. I made a joke about it in my mind that she must have time-traveled back to Victorian England for her medical education. That was much easier to think about than facing the fact that misogyny is what’s being taught to all the young ones coming up now. I couldn’t have anticipated this in a million years.
Most likely it’s because I’d had very little need for doctoring up until that time and was therefore out of touch. I naively thought doctors were automatically on my side and ready to problem-solve with concern and caring. Isn’t that why they took up the profession? Or did I get that sentimental notion from watching MAGNIFICENT OBSESSION, “Ben Casey,” and “Medical Center?”
After a hospitalization with round-the-clock IV steroids and extensive MS testing, the neurologist diagnosed me with cervical myelopathy and sent me home with a month’s worth of oral prednisone. I was told that while it could be MS, nobody makes the diagnosis after just one attack. I would have to have a second attack and get re-tested for them to revisit that kind of diagnosis. There was no follow-up. They discharged me with the suggestion that if I experience the same symptoms in the future, I should give them a call. That was it.
Shocked and blindsided
I was shocked, blindsided by the cold reality that they would cut me loose so abruptly. I had no diagnosis and was therefore no longer of interest. I think I grew up a lot at that moment. My childhood world view of avuncular patriarchs died a quick and painful death. I realized how very sheltered I’d been. Now I didn’t know what to expect, of them and of my future health.
Like so many PwMS who came before me and those who have come after, I felt shattered by my experience, often reliving it in a way not unlike those who have Post-Traumatic Stress Disorder. I felt terrified about my future. On the bright side, however, the terror evaporated three years later. The future had become the present and I was okay, still working, and mildly disabled. The future always looks brighter when you know you aren’t going to die from this thing.
My second attack
My next surprise was that when I did finally have that second attack, I didn’t know that’s what it was. I’d spent a full five years in remission. The weakness and numbness of my first attack had mostly subsided after a month or so, leaving me with a little foot drop that only kicked in after having walked seven miles around town. Five years later, I’d just started a new job and woke one morning with a numb, weak left arm and hand, and with shortness of breath. My first thought was carpel tunnel, not MS. I didn’t want to think it was MS, having had the luxury of sinking into steadfast denial for five solid years.
I recovered within a few months but retained permanent disability in the left hand. One cold January day in 2005, six years after my first attack, my neurologist told me this:
“Since your lumbar puncture tested abnormal, I’m now convinced you have MS. So I’m giving you an official MS diagnosis and literature about Rebif and Copaxone from which you can choose.”
A sensation welled up inside me like ice water trickling into a pitcher. I shuddered.
“You’re not gonna cry now, are you?” he said, watching my tearless face. “It’s not like it’s a big surprise.”
I fell mute with sadness and shock. The diagnosis awakened my dormant grief and the sting of his callous remark locked my jaws. I wondered what kind of diagnosis he thought would be appropriate to cry about. Stage IV cancer? I didn’t dare shame him about it and run the risk of getting gut-punched while I was feeling so fragile. So I ducked into a nearby restroom and let myself cry for a couple of minutes, then mopped up and hurried back to work. I told no one there what had happened. It was Be a Callous Jerk Day on Bizarro Earth. Best to lie low.
After many losses, increased disability, and early retirement, I am now living alone for the first time in my life—and I’m thriving! I’m more independent and capable than ever, and that fact continues to boost my confidence. My attitude is that if I am able to do a thing—even if it’s hard and painful-- then I should do that thing. My efforts and the short recovery time and resilience that come afterwards make me feel more optimistic about how long I will remain independent.
And that’s the best surprise of all.
How many specialists did you see before finding "The One"?