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re: re: End of this path... Dec. 18th, 2007 2:23pm
I knew that you had had problems with them, and I thought long and hard about where to get the DNA testing done. It came down to Quest and Mt. Sinai, and I really got more and better information from Quest. But in the end I decided to go with Mt. Sinai because I had corresponded with Dr. New about my daughter's odd stim test results and Dr. New had done research herself that verified that the stim test results did not fit the normal pattern. Although she didn't know why that happened, she was the one who recommended DNA testing in the first place. So I thought that if there was any question about the stim test results not matching up with the DNA results, she would be helpful on that topic. They were actually pretty helpful and actually called me today (see my response to mjak above).
They didn't address the carrier issue, but I think they would say that there is some overlap between carriers and nonaffected. If you look at Dr. New's nomogram, my daughter's results are right in the middle of the carrier range. But maybe that nomogram is outdated now.
I don't know, I don't think we can pursue a diagnosis of LOCAH anymore. I think she will have to go off of Florinef and prednisone (if she can manage to wean off it with her hives) and we will have to see if there is a big difference in her symptoms. I'm afraid that she will have to feel a lot worse before anyone will take her seriously.
