Clumsyiam, as Rose mentioned earlier, I think you need to consult a geneticist to help you sort out your thoughts. It is a very difficult issue that involves not only you, but your partner and the children you might decide to have. This is something that needs to be discussed so that you will be able to see the pros and the cons.
I wish you the best, whatever you decide.
Cicina
thank you everyone for your input.
Linda, thank you for answering regarding travel insurance. That was one of my concerns, and most likely my reason for not getting tested for a clear diagnosis. there is nothing concrete saying i have it, and i'm fine with that for now since i don't need any disability assistance. i just don't want to be labelled as high-risk anything and lose insurance or anything like that. 50% chance of having it also means 50% not having it, so whatever. i just don't want me or my siblings to limit opportunities because of a diagnosis that won't present symptoms for years (if ever).
BWGreen, i am just outside of Toronto.
Olive - There's a group in Toronto - if you want, I can try to find the person's name that organizes it. I am up just outside of Ottawa - but I used to live (and still have family) in Scarborough. Are you on Facebook? If you are, look for me on there!
Hi; I live in upstate NY. We are almost neighbors! (280 mi.) :-).
I too have SCA3. I saw both my mother and grandmother deal with it. I was oblivious to the genetics until I started having trouble with balance in 2002. My neurologist treated me for 10 years as a SCA patient, not knowing which hereditary ataxia it was. In 2012 my health insurance would cover the testing 100%. My oldest daughter wanted to know, she thought, so she could make sure she got enjoyable things done before becoming disabled. She goes with me to my neurologist 125 miles away every year. It's been over 2 years now and she has not had the test...so she, like you, has become apprehensive. I think she will go ahead with it soon.
But I have 4 children: My second daughter already had a daughter before I was tested. She has since tested NEGATIVE! And that means her children (they have a son now, as well) are too. I’m so happy! My son has 1 child and will probably have a second, and he has tested NEGATIVE too! So 2 daughters, who are not planning to have children have not been tested. I still hope they are negative too, though it may be a long shot.
So you may get good news if you get tested, and breathe a sigh of relief. And since you are so stressed over this, maybe it would less stressful to know the truth, no matter what that is? Something to think about…
.AND, just to show that anything is possible, my grandmother was one of 10 siblings (yes, TEN), and only 1 sibling, a sister, had it!
BWGreen - I am in Calgary. Be careful on those cobblestoned streets!
BWGreen said:
I agree - travel when you can! We're going to Rome and the Med this year - because I said to my wife "who knows if I'll be able to in a few years?"
Olive & Linda - whereabouts in Canada are you? If you do get a diagnosis, there are a lot of groups around that meet so you can meet others with the same issues, and get a lot of support! I am in Ottawa - there's a group up here, and there is one in Toronto that I know of.
BWGreen, I'm not sure if I'm ready to become part of a group physically like that yet. I know that may be weird, but I just don't think i'm ready. i like anonymity of this site for the moment. But thank you!
Sharon: thank you for your message. I know it's all about odds and you just never really know how it will play out. Thanks for the message of hope.
No problem - when you are ready, know that there are people here for you!
Thank you!
don't be afraid to ask questions and reach out we're all here for each other :-)
Olive said:
BWGreen, I'm not sure if I'm ready to become part of a group physically like that yet. I know that may be weird, but I just don't think i'm ready. i like anonymity of this site for the moment. But thank you!
Sharon: thank you for your message. I know it's all about odds and you just never really know how it will play out. Thanks for the message of hope.
I have had ,or rather have been diagnosed with Ataxia for several years, After having an arm full of blood taken , a muscle biopsy and bits of me sent all over the place I heave finally been diagnosed with a very rare SA 14. I have not got to see a genealogist because there is a good chance that I have given it to my children. You can imagine how that conversation will go........... Peter England
would it be possible to get genetic testing and use another name or identity so no others know your business and you dont hurt your chances of getting refused for insurance. Jerry