August 27, 2016

"Why me? I'm a general neurologist, not a Parkinson's specialist."

I decided to switch to a new neurologist.

When I had my first meeting with her, she began our visit with the question and comment above. We were off to a good start because she immediately got us sharing our views about the doctor-patient relationship.

After my 2009 Parkinson's disease (PD) diagnosis, I worked with a neurologist in the Parkinson's unit at Georgetown University Hospital. After a while, I switched to neurologist at George Washington University Hospital. Why? A PD neurologist at the Parkinson’s and Movement Disorders Center of Maryland (a clinic affiliated with Johns Hopkins University) thought the Georgetown doctor was overdosing me on carbidopa-levodopa (Sinemet), the key PD med.

All three of those doctors had an issue with my use of 5-HTP, the over-the-counter supplement that boosts serotonin and -- when combined with the carbidopa in Sinemet -- has a potential for increasing my blood pressure (BP). The Georgetown doctor listened… and accepted my explanation that 5-HTP warded off PD’s most common non-motor side effects: insomnia, constipation, and depression. The other two neurologist didn't pay much attention to my case for 5-HTP. I felt like they conveyed these messages:
  • They were in charge of my treatment plan, not me.
  • I should stop taking the supplement I knew worked so well for me.
  • I needed to continue with my blood pressure meds.
How I Explained My Pressure Spikes
My high BP readings they saw in their offices convinced them that I needed BP meds. They seemed indifferent when I explained that the readings I took on my own monitor at home usually fell within the new guideline of 150/90 for people aged 60+. And they didn’t seem especially interested in my observation that my BP spiked
  • during my PD “off periods," and
  • when I was in their offices (the common “white coat syndrome”).
I probably would have been beaten into submission were it not for my BP doctor, who worked with me on sticking with the 5-HTP while finding other ways to deal with the BP spikes. I told him I’d seen reports that some doctors thought that people aged 80+ without coronary issues could discontinue taking blood pressure medication altogether. As we discussed alternatives, he said, "I won't lose any sleep if you decide to stop taking the meds."

Which is what I did.

I wanted a new neurologist who was interested in working with me, not just telling me what to do. Soon enough, I learned that listening -- working WITH patients -- was her general approach.

Earlier this year, I also changed my primary care provider. In my next post, I'll discuss the factors I considered in selecting a doctor.

BTW re My Blood Pressure . . .
, , , here are the readings I got on my monitor this morning:

9:30 - 155/93
10:00 - 125/67
10:30 - 134/69
11:00 - 116/62
11:30 - 116/56
11:50 -120/63    

I stopped taking blood pressure meds April 23, 2014.                                                                           

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