@japlok, it does take a super long time from once something is thought to be important to it actually being integrated into the standards that are followed when we go to a medical provider. It seems like the information changes quicker than the communication can happen, which makes sense to me until it affects me. I feel your frustration!

I believe you mentioned your wife’s diagnosis was at home and you also made a trip to Mayo Clinic. What type of information was reviewed or type of process did she go through at each location? Were they identical, similar…completely different? It would be interesting to ask your questions to everyone she has seen.