Well, I've been around for a few months now and I want to thank everyone for all the support.

I am the first in my family with HD. I went through two years of poking and prodding, misdiagnosis, etc, etc. When told I should be tested for HD I said sure, what is it. My family checked it out and we all thought it was a no go.There's no way. Guess what? It was HD. With a CAG of 36 I became the first. I learned my children are at risk and I have no idea how I will progress.

I've had some pretty bad experiences with Doctor's trying to get a diagnosis. It took a physical therapist to recognize a neurological problem. His suggestion was Mayo. After some family discussions we decided to go. It brought so much closeure to this ordeal, as devastating as it is.

The main reason for this post is to help understand how I get into so many problems with Dr's. Even after my diagnosis I found an HD center of excellence in Birmingham, Alabama. This was great, two hours from home and not eleven. It had to be the worst experience along this road. The Doctor questioned Mayo's findings, made inappropriate comments about them, read their reports and I believe made up his mind before coming in the room. He said even I should never have symptoms with a CAG of 36. (It is belived mine was triggered from a head injury.)

From conversations at Mayo, it has to start somewhere. Perhaps my Father had the expanded allele or it could have manifested itself in me.

Have the rest of you encoutered diagostic problems?

It has gotten rediculous.

There are so many misunderstanding about HD even among specialists. The best doctors are those who have seen many cases and accept the broad spectrum of symptoms. I've had the same problems with some doctors
I am not sure why you had the experiece with the COE but I would guess that they feel that you should not have been manifesting symptoms yet with a 36 count. There is still 'so much' to learn and understand about this disease. Just be glad that Mayo was able to give you the diagnose and you can start to benefit from help available. Keep trying to find a good neuropsychiatrists who will work with the Mayo diagnose and see him/her on a regular bases. In our family we have used both COEs and individual neuropsychiatrists and have had some great doctors but it took a while to find the right ones.

Some "experts" in HD don't even believe that trauma can bring on the symptoms early. Some Dr's are just Dingledorfs, ( a made up word, my grandson and I made up so no one would know what we are talking about) You need to keep looking for a more reasonable Dr and it doesn't have to be one from a Center of so called Excellance. You may have neurologists nearby that specialise in movement disorders or even HD. Hit the phone book and start making phone calls, Good luck, Pat

your cag is incredibly low. I think you should focus on better recovery from your brain trauma and the HD should not be a problem. I bang my head all the time and have concussions which I have to treat myself. However I have a brght brain program which I do every day of games and puzzles, I eat little processed food, I seldom drink alcohol. I'm still out in my canoe in my 60s, nd I play the piano too.

the HD test is something I prayed for because not knowing was har t o live with. It took a year for the medical system to pass me as not likely to kill myself, but the HD doctors refused for another year to actually dx whewther I had it or not. I pushed his 2nd year resident in neorology who's name was DR.HUNTINGTON to make the dx. She had never heard of HD

there have been many mistakes made by the med team which I know about, and the hospital won't pull the records and reinterprete results for 39 CAG who were told they did not have it . HD gets worse when i'm sick with something and better when I'm healthy
take care dusty