After a long wait (6 months) I finally had my appointment at JRH with Dr. Tofaris on Friday. It was definitely worth both the wait and the journey (I live in North Devon) to finally speak with someone who knew what I was talking about. They may not be able to offer any imediate treatment but it does make such a change not have a blank look from the person seeing you because they have no previous experience of someone like you! Now I have made the contact there I hope that if any trials or possible treatments are around I will hear about them.
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