Confidence in your treatment regimen?

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

I recently fired my Neurologist. In 15 years he hasn't run any test or offered any advice. He has canceled my home infusions twice without discussing it with me. He is not read up on treatments. I am currently on Ultomiris which works 80% for 6 of the 8 weeks. I have waited 3 months on a new Neurologist and have 2 more months to go. So to answer your question, no.

Initially I had a great deal of trust and faith in my neurologist and treatment. After going on Mestinon I went into remission for almost 2 years. Then I had a flare and things went downhill from there. I finally got back in to see my neurologist and he put me on prednisone--a lot of prednisone! Eventually this worked. But I need to get off this and on something that doesn't destroy my body. As of now I am unable to get in to see my neurologist anytime soon. I will have to wait several months! Even using the portal is not helping as I am not getting responses from the doctor. I am now exploring other options such as finding someone several hours away. This is dishearting, but I am dealing with it.