Update on genetics councillor appointment


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Today I had an with the genetics councillor. Originally it was planned that I would see her in person when she was up this way but due to the carona virus we had to change the appointment to teleconference.
This was a follow up to the appointment I had in February in regards to doing testing to see whether I have the Huntington’s disease gene.

As I have decided to go ahead with the testing the genetics councillor is going to arrange for the paperwork to be email through to me so I can have the blood tests. The blood will then be sent to the city at the hospital she works where they do the testing. It’s a bit different to normal blood tests and takes longer. She said to takes approx 6 weeks for the results to come through which I knew as that’s how long it took for dad’s to come through.

Once she gets confirmation of results she will contact me to line up another appointment, possibly another teleconference to talk about the results.

My best friends been here as a support and help me take it in and she’ll probably be there when I get the results aswell.

I was due to see my neurologist in June but it’s been delayed (I expect due to the virus) and I’m now not due to see him until around August so I’m thinking I might get the results of the blood tests and see the neuro around the same time lol.
Hi CQ,
I wish you the best of luck with the genetics tests and I hope all goes well for you. Epilepsy runs in my family
but my neuro told me it wasn't genetic because my other family relatives all had tonic clonic (grand mal) seizures
where mine were only absence and complex partial. It's amazing what a person can learn just from a blood test.
Wishing you only the best and May God Bless You!

I've been wondering about you! How's your dad? How are you doing?

Ever since you mentioned it I've been reading more and more. I never thought there was late onset Huntingtons. My grandmother and her sisters as well as some of their children, and their children's children were dx much earlier. I didn't know much about that side of my family until I did several of those dna kits and found them. I'm still having distant family dying from this horrible disease. :-(

My dad was 69 when he died and had several health conditions, it makes me wonder if it may of developed later in his life..or maybe he could have been in the early stages. If he had the gene, there would be a 50/50 chance it would be passed on to me. If it was, my kids would have a 50/50 chance. So while I'd like to know, it's scary too and I don't want to know. I'm torn.

I hope your result comes up negative and you don't have to wonder anymore. **hugs**
My Dad isn’t too bad, his Huntington’s is only mild. It’s possible he started having signs in his 50s then 10 years ago he started seeing a neuro because of his memory but they didn’t pick the Huntington’s up until recently because of the tests.

I’m going ok, I’m just waiting for the councillor to send through the info for me to do the blood tests but I think she only works 2 days so it’s when she can get the info signed.

I’ll keep everyone updated when I get the results
I had the blood tests for the Huntington’s test on June 9th and I got a phone call from the genetics councillor today. She got confirmation that the tests are ready so we could now make a time for the teleconference for her to give me the results and discuss them.

She only works Monday and Tuesdays so we decided on 18th August.
Hi CQ,

I wish you the best of luck and I hope everything works out for you for the best. I know I'm at high risk of cancer
and liver failure do to the seizure meds I'm taking. I have to speak with my Dr. also. I wish you only the best of luck
and May God Bless You!

Hi CQ,
I'm very happy to hear that you don't have the Huntingon's gene. I wish you only the best in life
and May God Bless You@

Yep big relief but I had myself prepared just in case I did have the gene.
I don’t regret getting tested as I rather find out then stress and wonder if I have the gene.
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