@techchick1025 I have had the completely opposite experience with Mayo Clinic, they are the leaders in the number of MALS patient they treat. I have had nothing but a positive experience with my team of physicians. Unfortunately because this is a rare disease even experts don't have all the information they need... there truly is no experts with MALS, however there are physicians who have a lot of experience. We need more research without a doubt. I know emotions can get high with this disease, frustration and pain can be overwhelming. I am happy you found the help you needed.