I have not heard of anyone getting the disease that didn't test positive. Although the amount of repeats that were ok to have has changed, what was ok, what was the gray zone and what was positive. I have to say it's his choice but if any doctor of mine was blowing me off I would find another. My neurologist is the sweetest person ever and very well versed in hd. There is an hd clinic at columbia in manhattan. I don't know where you are located but maybe he can call them and they could direct him to a doctor in his area that has more experience with the disease. I spoke to Paula Leber-Wasserman at 212-305-4597, she's very nice and may even be able to help him ease his mind.
On Sat, Jan 19, 2013 at 10:35 AM, tmcandinh@... wrote:
My brother was diagnosed with HD we did not know it ran in the family after he was diagnosed my father got tested and he was the carrier
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----- Reply message -----
From: "Emily" <missem621@...>
Subject: [Huntingtons Disease Support Club] Information Please!
Date: Fri, Jan 18, 2013 6:57 pm
Hello, I am new to the group and would like to get a little bit of information from anyone willing to give it. Has anyone ever heard of a person who did not inherit the HD gene, getting the disease anyways? My brother has been having multiple symptoms that relate to HD. He is really concerned and very scared about it and the doctor he has been seeing is not interested in running any tests for HD because the chances of it being that are so slim. Should my brother follow his instincts and find a doctor who will test him? Or does anyone have suggestions of something else that it could be. I am trying my best to be a supportive sister and just want to know what people who are experiencing it have to say so that I can help him. He is so worried that there is nearly nothing I could say to convince him that it is probably not HD. Any and all input is appreciated. Thanks in advance