It can be really frustrating Joan, but don't give up. Hopefully you can find someone who will do the proper testing so you know the best course of action. Guessing "it's this or that" doesn't seem like it's very useful. Have you requested a referral? Perhaps doing your own research and finding a specialist with positive reviews and rankings might be better than a referral.
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From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish