Huntington's runs in my family on my Mom's side. Two of the five siblings died from it. Of those a few cousins now have it. My Mom died in car accident at 27 so I don't know about her. I worry constantly about it. By chance I met a lady at the ballpark that has it. With very little support, and the fact she has a nine year old little boy I've tried to help her family out. My concern for myself started a few years back when blood test were abnormal for no known reason. My CPK is elevated. Basically indicating muscle disease. Every test available and no explanation. When I started using creatine daily my levels came down a little (a good thing). I have been diagnosed by a psychiatrist with everything from bipolar (uncle same diagnosis, but turns out it was Huntington's) to anxiety/depression. I am almost unable to learn new things. I use a white board to keep up with everything. I can't manage money because I can't keep track of spending. I have mentioned the family history to doctor's, but they say they see no symptoms. They are basically looking for Chorea. My balance is off at times, and I'm clumsy. Between the mental illness, CPK elevated, and clumsiness I worry. How do I go about being tested if my doctor makes me feel it is in my head?

Your doctor knows your sibs died from HD and is making you feel like it is in your head?

Not MY siblings. My Mom's siblings. Because she died in car accident when she was 27 I don't know. I'm just worried because of the things I mentioned in original post.

Tell your doctor to refer you to a neurologist or see another doctor. It is so common for doctors to treat like you no nothing. You have to be firm because it is your life not theirs.

Only 30% of HD positives have the classic chorea. The symptoms are varied but yours are common


Huntingtons is now on Social Secrity Disability compassionate allowance lists so it is easier to get approved.

Thank you for the feed back. Appointment with primary care care doctor Friday.

Jennifer, be your own advocate. Not everyone with HD presents the same way. Several years, many "I don't know" from M.D.'s and I had HD. If I have learned anything on this forum it is that we all present differently. Perhaps it's not HD, perhaps it is. What if it's HD and something else. I learned this in my final diagnosis. I am the first in the family and when one of my sister's looked it up, we said no way. Well; way!!!! Until the test results came back, we were convinced there would never be an answer to my symptoms.

It was a physical therapist that saw a neurological problem. This was after some of the best in their field saw me and said "I don't know what's wrong or what to do".

Perhaps you need to change providers and go somewhere that they will take you from head to toe. Mayo was my choice.

Somewhere on the forum there is an article about my journey. Everyone has a story but perhaps it will let you know you aren't losing your mind.

Mike