Thank you for responding. Yes, you do have a lot going on, definitely more than just DIPNECH. Like you, I hear from every doctor that I am a challenging, baffling, interesting, etc. case. My son does too. We both have a rare hereditary neuropathy that causes oodles of issues too. I think you're wise to go to Mayo Clinic because you need providers that are interested in rare cases and love the challenge. Places like Mayo Clinic have also seen more rare cases and have more resources. Some doctors do not want anything but textbook cases. We are definitely not that.

I'm glad your cough has improved. To me, that was huge! It was miserable for 30 years and it's a social problem. I couldn't be near anyone with scented products, candles, air fresheners, cleaning chemicals, but often was coughing for no apparent reason. Working in cubicles was impossible. Getting an office was a blessing then remote work even better.

I also am missing some enzymes to metabolize meds properly. I always have those one in a million side effects and even ones that haven't been previously documented. Often very serious, scary ones. Plus allergies. Allergic to NSAIDs and narcotics don't work at all, just have side effects so I take nothing even after surgery. I have a great fear of meds and take no OTC meds. So I felt for you when reading about your side effects. But like you said, when you have multiple disorders sometimes it can be hard to assign symptoms and side effects to the right cause.

I hope you get some answers on the 6th and all of your issues can be resolved. Scary to have new things popping up. Yesterday, my neurologist told me she often asks God if I really need to have so many different challenges and can he lighten my load just a little? I'll pray the same for you. I always keep in mind that there are a lot of people worse off. We're still here!

Blessings to you as well.