I was diagnosed with multiple sclerosis (MS) in April 2001. I had been living with ignored, explained away, and misdiagnosed symptoms for at least 15 years prior to that. I was 35 years old when I heard the words, “You have MS.”
In some ways, that moment feels like it happened only yesterday, and in other ways, it feels like forever ago. But it doesn’t feel like 21 years ago.
My initial diagnosis was suspected by my primary care doctor, alluded to by the radiologist who did my first MRI, and confirmed by a local neurologist who referred me to an MS-specializing neurologist at one of several MS centers in nearby Seattle.
The relationship with that center came with the added benefit of association with several other MS specialists — physiatrists, nurse practitioners, nurses, a rehabilitation psychotherapist, and eventually others, including physiotherapists, occupational therapists, art therapists, and the like.
Until the addition of additional neurology and physiatry docs, all of the practitioners in the center were older than me. Not a bother: I’d come to expect learned men and women to be senior to me in age. But as I got older, so did they.
One by One, Our MS Professionals Retire
When trying to get ahold of the neurologist who originally diagnosed me for some paperwork a few years ago, I learned that he had retired. I got what I needed in the end, but it was a bit of a hassle, as the practice had changed hands and, well, you can see how that might all take a bit of extra effort when I hadn’t been in to see him in a few years.
Then, last year at about this time, I received a personal message from the MS nurse practitioner of my original team saying she had decided to hang up the lab coat after two full careers in medicine.
It brought to the fore that my original team will all — in a matter of a few years, I’d expect — age out of the profession they have all served so ardently.
What does it mean for us when our docs (and nurses and others) retire?
Finding New Practitioners Can Be Easy, or Easier Said Than Done
I know I was fortunate to live in a part of the world that had even one MS center, let alone several. Many people in the United States and elsewhere have to travel great distances just to see a general neurologist, much less anyone who specializes in our disease.
Although the Seattle-based MS center and its physicians are still my primary MS doctors and trusted resources, I happen to now live in a country that has no — that’s zero — doctors who specialize in MS, so I understand the difficulties.
We spend a good deal of time and energy to find, travel to, and develop patient-doctor relationships with our medical professionals. When those relationships come to such an end (logical and deserved as retirement is), it can leave us searching for something that is more difficult to find than it was when we had more resources to go searching.
Throw in American health insurance network restrictions, and you have an unpleasant parfait of MS care shortfalls.
Building New Relationships Always Takes Time and Effort
Even for those who can easily transfer from one neurologist to the next (in the case of someone else in the practice taking over or a center that has several doctors in its bullpen), the personal relationships many of us have built with our providers over the years-cum-decades is difficult (if not impossible) to replace.
If we had a choice, we did our research and made an informed one. If there was only one neurologist in our area or network, we made it work.
To have to pick up and move medical houses after a hard-fought slog through the difficulties of our disease, its symptoms, and its knock-on effects is like having a rug pulled from under us — and MS does that to us enough, thank you very much.
It’s One More Difficulty on a Long List
Whether or not we’ve considered the advancement age of the team on the other side of the reception desk, we’re all getting older. We’re marching on toward an age when clinical practice for our veteran medical professionals will come to a deserved close.
It’s just another difficulty of living with a chronic, special disease with which we will likely live until well after our doctors retire.
Wishing you and your family the best of health.
My book, Chef Interruptedis available on Amazon. Follow me on the Life With MS Facebook page and on Twitterand read more on Life With Multiple Sclerosis.