I am reaching out and hoping for help. My children (ages 24 and 25) are at risk and considering getting tested. My daughter believes she is already experiencing symptoms and very concerned. Who should we see first family doc or neurologist? Approximately how much does testing cost?

I've written an overview of testing which might be helpful: [www.hdlf.org]

Testing at a testing center costs about $1,400 and it includes counseling. The test itself costs about $300 but it's hard to find a lab that will do the testing without the person having followed the protocols at a center. There are some labs that will do the test from a family doctor. Most people at risk go to a testing center so that the results can be confidential. Some testing centers are listed on the HDSA webiste. [www.hdsa.org]

It's best to get all insurances in advance since if someone tests positive they won't be able to get them later (life insurance, long term disability, and long term care).

Testing is always stressful. It takes a lot of emotional energy to test and about a year to come to terms with the result, either way.

Keep us posted, we will be thinking of your family.

Thanks for all the info! Very informative!

Welcome Grams. You've found a good place. Lots of care here.

Marsha has the best insight. She gave you some very good advice about insurance. Similar post come up frequently. Getting in place STD, LTD and life is a good move. Unfortunately, once diagnosed with just some of the symptoms will disqualify you.

Good Luck,
Mike

I know that there has been a change recently in the law regarding pre-existing conditions. I think the date it is January 2014. Should she wait a year to get tested?

Grams, I don't know the new health care changes but it sounds correct for pre-existing conditions on health, not so sure on STD and LTD. I believe these are very important for at risk individuals. Most wind up paying 60 percent on LTD and even at that it's not pleasurable but it is a good safety net, hopefully it won't be needed. Employer group plans usually offer this at a very reasonable rate. Once you go out on STD and LTD, SSDI is required by most to be submitted. They (insurance) picks up the rest. At such a young age the social security pot is not very full so with private policies in place you place a buffer between you and the ability to work 30 years and contribute to SSI. I would look into policies prior to testing if you can.
Mike

I have a 23, 21, and 15 at risk, so far we talk about the testing but they have decided not to get tested yet, my daughter is working on education and think that since she does not want to have kids she is going to wait, my son is in the military and have a son, and decided not to test either, I am just talking how my kids decide not to do it I give them the choice to find out and explain to them everything I know about HD I keep praying that they do have it but looking for a good future for them, seems to me that we are never ready to find out something like this specially my daughter that will kill her to know at this point while getting her education, according at what I know is that insurances will not take them if the know that they have HD, I wish you the best and praying that they dont have it, God Bless you and your family.

Thank you for all the replies. I guess I need to look into the insurance part a little more. I am currently covering my daughter on my insurance (until she is 26). My kids have known they are at risk since they were very little. I think it would give her peace of mind knowing one way or the other. It's just hard to decide what to do at this point.

Not sure about future coverage under the new Health care but I do know that you cannot allow her insurance to lapse for 'even a day' between when she leaves your policy and gets a new one. Make sure that they overlape, so coverage has never been dropped.
If there is a hint of the possibility of HD in any medical records she might have a problem finding insurance.

Bridie..thank you. I will explain the need for her to continue insurance. She is currently not working, so I hope she has some in place soon.