OK. I am finally going to go to my primary Dr and let them know I have HD. I had tested anonymous a little over two years ago, so insurance would not know anything about it. I have been showing symptoms for a while now and talking to a friend of mine that is a Dr. she said it is time I start documenting it. Most of my symptoms are memory (short term), being able to recall words when I am having troubles articulating speaking, stumbling on my words, forgetting things that I was doing. I am in my second masters program and my grades are starting to slip. It is much harder to comprehend everything and retain it for tests. I got a C on a midterm and I never get below an A. I find myself at times losing my balance, but I normally catch myself before anyone notices. I am very tired, not hungry, sad, moody, and such. I tend to cut my wife and kids off and stop talking for long periods of time. I have massive headaches that I have been seeing a neurologist for.

I will be 34 later this year. I have a CAG of 42. My Dr. friend said since the laws have changed it was a good idea to start getting everything documented because it might be time to start taking care of things. They also said I might need help and I might need to stop trying to do everything on my own. No one knows about my HD but a few family members. I have been trying to hide it. How should I bring it up to my primary dr? she i start with the symptoms and the family history (I can go way back) and not tell them about the test so they will get it done on record, or do I tell her off record the whole story? I have an appointment with the Nuro a couple of days after for a followup on my headaches, so i figured it would be a good time because if they wanted me to go ahead and tell nuro I could. But I'm not sure what to say or do. And to top it off I will have my kids with me. They already know I have HD and have since I tested, they are 7 and 9 (only my 9 year old is at risk because I gave birth to them). To much going on in my head, and I can't sleep anymore which is another problem I have head for a few years too.

Jade

I would tell your doc your story exactly how you just told us. There is nothing wrong with saying I tested anonomously, and because I am now having obvious symptoms, I now need you to know this, so you can retest me on the record, and begin documenting my illness. Just the way you said it, I don't see any problems with that

I am sure you know but before getting HD on your record make sure you have all the insurances you will need.

Good advice already. Don't feel bad, my son wants to test anonymously but we can't find anyone or a packet to do so.

It's much easier for me to say since there was no known HD until me in our family; don't be afraid to be your own advocate. This was my situation. Years of persistence paid off.

If you think you are symptomatic take steps first to take care of you family financially. I fortunately did so without the knowledge of HD.

Mike