Confidence in your treatment regimen?

Because you are never cured, you always wonder if you could be better. I am satisfied with my treatment and the result. But if I'm at 80%, the temptation is to wonder if maybe I could be at 90% if I tried something else. I resist that temptation. Stability is what I seek. And a stable outcome at 80% is so much better than all those years of ups and downs. My goal is to be good enough to push my MG into the background and go on about enjoying life.

Very confident

How easily or difficult is it for you to have faith and confidence in your treatment regimen? Answer: Very difficult to impossible. I'm very refractory. Nothing works more than slightly and most have no effect at all. Still trying new things, though. Never say die. Only absolute exclusions: anything that raises meningococcal risk. I've seen the downside in others. Yikes!

Has this changed over time? Answer: No. I had very fast onset (six weeks) followed by five weeks in a teaching hospital. They tried everything. EVERYTHING. Nothing worked, but Prednisone kept me perky. Told me I was refractory and discharged me to a nursing home, where I remain. Research told me from the get-go that refractories have it tough, and experience proves that we do.

Do you doubt faith in doctor decisions or your own choices in your treatment regimen more? Answer: As to doctors, I live in a little town more than 100 miles from any MG specialist. I use a nice, local, general neurologist. He's very limited and isn't willing to do more than five minutes (max) research on his phone when it comes to treatment alternatives. His answer to every problem: double the Prednisone! So I don't have much faith in his decisions. As to my choices, I'm flying absolutely blind, which kind of makes it easy. I'll try anything approved by authoritative meds (no woo-woo, supplements, ayurvedic, or RFK-suggested treatments) provided the black box risks aren't too egregious.

pretty confident