Finding a good primary care physician is challenging for me
Friedreich’s ataxia entails complex medical needs
During a recent drive home from an appointment with my new primary care physician (PCP), I felt a dark cloud dissipate that I didn’t even know was hanging over my head. The sun was shining, and I sang a couple of stanzas along with the car radio.
It was my first appointment with this doctor, who is my third PCP in about four years. The first PCP I had was a kind person, but seemed willing to let me live with the status quo of my conditions when I didn’t need to.
I have severe osteoporosis, for example, for which the first doctor prescribed more calcium. This strategy wasn’t aggressive enough, and switching my PCP enabled me to see an endocrinologist who’s now treating my osteoporosis more aggressively.
I ended up switching doctors again, though, because I didn’t think the second one was entirely familiar with the complexities of Friedreich’s ataxia (FA). I’m also not certain that they consulted with my neurologist.
When you have a rare disease
Having quality primary care is important for anyone, but the many concerns with a rare disease make it critical. Our health is a precious commodity!
I agree wholeheartedly with SMA News Today columnist Brianna Albers in that I don’t expect my PCP to know everything — or even a lot — about my disease. It is rare, after all. But I do expect them to consult with specialists to provide the care I need and deserve. For me, an essential member of my care team is my neurologist.
I’ve had many PCPs in my lifetime. Some I switched while looking for better care, while others moved away (or I moved away).
There are many reasons why finding good primary care can be difficult, including widespread physician shortages in the U.S. But in my experience, it’s harder for those of us with a rare disease.
My neurologist of over 20 years is basically my primary physician for FA. My family and I couldn’t be happier with this doctor, whom I thoroughly trust. I want a long, strong relationship like that with my PCP, which I don’t think is too much to ask.
Last week, I met PCP number three. So far so good. This doctor listened well, didn’t seem freaked out by all of my needs, and addressed the issues I presented in addition to my preventive needs. Most reassuring, the doctor told me I’d be in good hands. I’m currently feeling (realistically) optimistic.
Because I was feeling so good, I took my husband out for an impromptu lunch after the appointment. We enjoyed good food, good company, and the feeling that my healthcare is in good hands.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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