I am new to this group so please forgive my mistakes. I see a recurring theme of getting diagnosed late and then not getting all the information you need. Our story is similar, my husband kept going to the doctor with a back ache and they kept telling him it must be a pulled muscle. Then when a sneeze brought the strongest man I know to his knees, I sent him to a doctor I knew and said “please don’t send him home without answers”. By the end of that day we knew he had holes in every bone in the chest ct scan. They scheduled him for bone biopsy. My best friend had passed in about a year with multiple myeloma so when they said he had it. ( I had already been reading) I asked for a referral to The Mayo Clinic in Rochester. We are now 2 ASCT, and multiple treatments down the road. It has been 9 years and he is doing pretty darn good. The doctor that Mayo sent us to in Oregon, was at Mayo which was our gain, always reminds us, that this is a marathon, not a sprint. In my opinion, if you or a loved one has mm, then you should seek the best help you can afford. We drove to Mayo and stayed in simple lodging, but the co pays were not higher, they were less, and our doctor here works with Mayo. If your doctor doesn’t play well with others, I would seek out a second opinion. Next, I would get informed, there are many sites on line with information. I love the international Myeloma Foundation because I can ask for help with understanding things if I need it. Next, get organized, you need to track all your own blood work and treatments because if you get sick on vacation and end up in a strange hospital you will likely need all of that information. It isn’t always easy, but it is always worth it.