Just want to say hi to everyone. I am in a holding pattern and simply devasted because of recent information I have received from my family. I have been tossed around to several doctors over the past few months and waiting for a referral for genetic testing. I am a poster child for not keeping secrets in families because I have a 30 year old son. I have adult onset chorea. I have been through a battery of tests and everything keeps pointing to Huntington's Disease. I have a brother that has become out of control with a mental illness. It's really bad and he scares everyone. Now I find out at 49 years old, I have no idea who my grandparents are. All I know is that I have a father with a movement disorder and a brother that is severely mentally ill and now.....I have chorea. I'm just beside myself. Yesterday, a specialist walked into my room and immediately says, "does anyone in your family have Huntington's Disease?" I told him that sadly there is a big hole in my family history so I don't know. How do you deal with the sickening waiting for testing for this horrible disease. I'm sick to my stomach. The chorea is awful and never stops. Just needed to vent and thanks for listening.

welcome to the forum flip.
I feel for you having all of this come at you at once.
one thing that really helped with my moms movements which were really bad were fish oil. its one of the recomended supps for hd.
and Ive had hd for 10 yrs with a higher cag count and people cant even tell i have hd or see my movements and i think its from the fish oil
I just wanted you to know you are not alone.
Laura.

my mom had medicaid and the nursing home took her with no questions asked. never sent a bill or anything.
they had physical therapy but she refused it so i dont know if it helps.
Laura

Welcome Flip,

You have come to the right place for support and knowledge about HD. Will be praying for a good outcome on your test. Are you testing through a Center of Excellence?

Carla

Welcome to the HDLF, Flip. Yes, a possible diagnosis of Huntington's Disease is a scary thing and your situation is not unusual. Because of incorrect diagnoses in the past, family secrecy, and new mutations, about one quarter of the time when someone has been diagnosed with HD, they are the first in their family.

No one wants to have this disease and yes it is very challenging and life shortening. I don't want to minimize the seriousness of this at all because if there's anything we hate in the HD community it is to have our fears and concerns dismissed. But that said, there IS life with Huntington's Disease. Is it possible to live a good quality of life for many years. And we have a great deal of hope because of tremendous progress with research. Of course it hasn't moved as fast as we'd hoped but progress has been steady and there are a number of extremely promising potential treatments in the pipeline. If you test positive for this disease, take some time to grieve the less complicated future you planned on having and then come out fighting. You can help us make this the last generation that will have to worry about this disease.

Please feel free to ask any questions you have about this disease. There's a lot of knowledge here and we are all happy to share what we know and what we've experienced.