Hello everyone,

I am new here. I do not know if I have Huntington's Disease or a Huntington-like disease. I have been having wide spread dystonia for a little over a year now.

My insurance does not have the University in its provider list. Anyway, after a long time I was able to be evaluated by the director of the movement disorder clinic at the University.

My father passed away in 2000 due to complete atrophy of his brain. There was no genetic testing or anything so it is unknown what caused his degeneration. His father died in the 50's from brain cancer, so I'm told.

So the director diagnosed me as having a movement disorder with mild cognitive decline and walking problems and is scheduling me for a genetic counselor appointment to have the test done for HD.

I'll let you all know what I happens, let's all keep a positive attitude and help each other out.

Welcome! Whether or not you have HD, I hope the doctors can give you some answers and treatment which will help. You seem to have a great attitude. All the best and please keep us updated.

Welcome blh!

You may want to look into getting some insurances (disability, long term care, life insurance) before the testing process. These things are more difficult (sometimes impossible) to get should you test positive...

Good luck!

I am still currently employed with a good insurance and long term plan...they are all aware of my problems and so far have been very understanding and working with me.

When my problems started last year I went on short term disability and was able to convince the neurologist I had at the time to allow me to return to work on light duty. So far my cognition is only slightly impaired, I am having more physical symptoms (dystonia, walking problems weakness with breathing).

I must admit I am very tired of the mental strain of my work, but I must keep going as I have not contributed to Social Security since my military days. So my long term is all I have.

I am just keeping the faith that I will find the diagnosis of whatever has stolen my body and I will always trust in the lord to provide for me and my family.

Hi blh,

I'm in a simalar situation where I was tested positive for HD while trying to work. I had memory issue and overall a harder
time focusing on my work. I work in customer field service and my employer has been pretty good too. They agreed to take away my travel duties as I was having anxciety issues while flying and meeting new customers Still doing phone support and having a more difficult time dealing with the technical side. Rigt now I worry about having enough to go on when I'm not able to my job anymore. I regreat not getting more insurance before I was tested cause now i'm screwed so
be sure that is something you look into.

Mark