Speaking of empowering patients, this is incredibly important.
He clicked on baclofen, and the Web site informed him that nearly 200 patients registered at PatientsLikeMe were taking the drug. He clicked again, and up popped a bold bar graph, sectoring those 200 across a spectrum of dosages. And there it was. Contrary to what his neurologist told him years ago, 10 milligrams wasn’t the maximum dose. In fact, it was at the low end of the scale. “They’re taking 30, 60, sometimes 80 milligrams — and they’re just fine,” Small recalls. “So it hits me: I’m not taking nearly enough of this drug.” A few days later, Small asked his neurologist to up his dosage. Now Small takes 40 milligrams of baclofen a day. His foot drop isn’t cured — there are no miracles in M.S. — but he has found that after 14 years, he can walk to his car without sinking into quicksand.
Long ago diabetics did not have access to blood-glucose meters. Doctors resisted this innovation, now considered the greatest advance in the treatment of diabetes since the discovery of insulin.
Thanks to Tyler Cowen.
On the subject of MS, there are no miracles but apparently great advances – see https://www.lowdosenaltrexone.org/
Both this and DCA ( https://www.thedcasite.com/ ) are treatments based on drugs that have been long in use, thus with a well known safety profile, except that they are used in smaller doses and for different uses.
And they are both cases in which self-experiment is the norm, because people with either MS or cancer are very willing to experiment and not willing to wait 10 years for the standard process.