In one of my groups, we have a woman with profound urological symptoms, pain, and gait problems. Positive Babinski. She is trapped in an NHS hospital in agony, untreated. They won’t give her a urodynamics test. Her neurologist’s assessment? It’s psychosomatic.
https://twitter.com/jenbrea/status/1336449962008178690
Another woman is having profound breathing problems, likely due to central apnea (very similar to what I had). She can only inhale four times a minute. Gets worse when laying flat. She is unable to get anyone to take her seriously. They’ve decided it’s psychosomatic.
I already know that if she has Chiari or CCI, she is very unlikely to have access to surgery in her country, even if that is what she needs.
To be fair, my neurosurgeon also thought I was lying about not being able to breathe, until he saw it with his own eyes: medium.com/@jenbrea/path-… He called it a “Partial Ondine’s Curse.”
We also have a number of people in our group who are homeless or about to be.
And Alan is absolutely right. None of these costs are ever counted, so there can be no reckoning. They are externalized to patients. We are ground to dust...
https://twitter.com/AlanLevinovitz/status/1336450770443657220?s=20
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