@jfannarbor and @johnbishop; yes, I have some thoughts on genome sequencing: Now that sequencing and other formats of research have begun to take a huge dip in expense, I am amazed at just how poorly educated and experienced the mass of USA doctors really is. Here is what tells me this. 1. Medicare and most other insurance (AARP, UHC, etc) require that orders for any genetic workup come through (as Medicare puts it) someone with MD or DO after their name. 2. In the past year I have requested this order from at least 20 MDs and DOs. I have paid for from my own funds 4 exome (small pieces of one's whole genetic package, all showing a variety of various genetic issues including Gelsolin, LGMDr23, etc; but much needed additional genome info (99%) has not been produced. EVERY pro I have approached has said something like "I really can not do that because I am not an expert in the field." 3. In easier words, "I do not know how to pick up my telephone and call either NIH, an insurance company, or a professional lab such as Nebula or Dante or GeneDX and talk to someone." Or, "I can call you, oldkarl when you miss a payment, but not call the pros when some medical service is needed." The only positive responses I had when I requested the process with Medicare coverage through the insurance company was simple. "We will gladly do this after you send us a huge amount of money." One large and complex organization wanted $7,000 up front, and another (last month) wanted $3,000, and I would still have to make another 5,000 mile trip at my own expense to get the work done. Sorry, but if you want the work done, you would best go to the bank and borrow $10,000 for expenses. Then, send the money to Purina for Cat-Scan food. You will likely need a few more cat scans before you die. Anyway, I could not resist that. You should know that my Primary, whom I have worked with for about 20 years, was one of those who turned me away. I think he is just lazy. And he sent me to the guy who wanted $3,000 and my 5,000 mile trip. Or you can send a small portion of that to Sequencing.com, Ambry, etc, or another lab not working through insurance), and get the work done right the first time.