Huntington Disease Lighthouse Families

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My first appointment

Posted by melissa1991 
My first appointment
December 05, 2012 09:32AM
Hi everyone, i had my first appointment yesterday with the genetic councilor. We spoke about my family history, the affects of HD and she asked lots of questions. Then i told her all the symptoms that i have been having and she said that they could be HD. So she said that my next appointment will be with her and a consultant who will do diagnostic tests on me to see if i have any HD symptoms. Then it will be my choice if i want to know. Then on the 3rd appointment i will be having the blood test which then will take about 4 weeks for the results. I feel quite anxious about my next appointment knowing that i will find out if my symptoms are HD. I think it is going to be in January!

Has anyone else had the diagnostic tests to check for symptoms? what does it involve?
Re: My first appointment
December 05, 2012 11:52AM
Melissa,

They will probably use the Unified HD Rating Scale (UHDRS) series of tests. The components are:

1. Motor Assessment
2. Cognitive Assessment
3. Behavioral Assessment
4. Independence Scale
5. Functional Assessment
6. Total Functional Capacity (TFC)

They are all non-invasive and painless. There's no reason to be nervous. Just do the best you can!

Will
Re: My first appointment
December 05, 2012 07:44PM
Hi Melissa. I had the test. No family history to fall back on (probably a blessing). The test are as Will said non-invasive. In fact I wasn't sure they were testing. It's much like normal office visit. We'll keep our fingers crossed for you.
Mike
Re: My first appointment
December 06, 2012 05:45PM
Thanks everyone smiling smiley
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