Bob and others ... Gary gives sage advice.
In the 80's Chris visited doctors and hospitals all over the San Francisco Bay area in search of someone who understood what she had. Most scratched their heads, and one even suggested she return to live in the UK. She came home one day in tears, saying that the latest doctor told her "I'm going to die". I called the guy, we paid a visit, then realized we'd found a gem. Earlier in his career the guy had worked at a little-known clinic within Stanford, and thought he recognized the symptoms.
We spent money for a prof to research the medical literature, and he came up with one other case in the world with identical symptoms, and that was someone in Japan. We visited Stanford, and a team descended on Chris. They went into the hallway to caucus, and came back with a diagnosis which they subsequently confirmed with tests. The prior doc was right on!
By coincidence, one of the team ran the radiology lab in the basement at Stanford, and was working his sabbatical "upstairs". He announced "you'll be seeing me when you come back for treatment".
Chris had daily treatment for 9 weeks, and was eventually declared 100% cured, although she lost all hair, finger nails and toenails in the process (they subsequently grew back). Had she not looked for alternatives, who knows what the outcome would have been.
Whenever I tell this story in person, I have a tough time not bursting into tears. Chris OTOH hasn't looked back; She gets up every day and looks forward, grateful for every day and looks for a new challenge daily. The toughest part of it all for her was seeing the kids with their baseball caps, hiding their bald heads.
Bottom line - if you or your spouse if not getting the result or treatment you deserve, go elsewhere.
