Nov 2018 Meeting

Our Last Meeting: 2018-Nov-3

We had a normal support group meeting in Annandale. 20 in attendance with three new patients and their caregivers.

Highlight: a harrowing tale of poor medical care using narrowly focused specialists. Our member was in great pain, with a variety of problems. Being loaded, over time, by her neurologists with increasingly hard-to-handle pain meds. Faced with a recommendation to start an opioid, she decided, on her own, to instead go gluten-free for two weeks. All symptoms dramatically improved (except, of course, her PN-damaged balance). Doctor’s response to this good news? “You should probably resume taking the meds we recommended.” What???

Take-away: It is difficult within Medicare to obtain high quality, diagnostic-focused primary care. When there is a clear diagnosis of PN, care can default to specialists who may not be trained and skilled at the broad approaches needed to detect concurrent issues like gluten sensitivity. (Other medical people can be blind too: for another reason, she spent a few days in a nursing facility. They refused to honor her gluten-free diet and she was immediately back in pain.) She is now doing well on a gluten-free diet. Really LIKES the special bread her daughter has found (No, I didn’t get the name of the product.)

Broader Take-Away: We greatly benefit when you bring your stories.

Low Light: Steve got mad at me when I dropped too deeply into my Debbie-Downer “The sky is falling” language. My wife wasn’t there to punch me in the shoulder.