Hello Everyone, I just registered with this group today. I don't know if i have HD in my family as no one has ever been dx with it, however while doing a family history, to find and find out answers to the mysterious symptoms and illnesses that have plagued my family, i have learned that i have a great grandmom who was bedridden. Her daughter who is my dad's mom, died very young while giving birth, so don't know if she would have been sick like her mother. I have been searching for many yrs to find out why i am slowly losing my cognive abilities over the past 20 yrs. I've been diagnosed with differant illnesses, but non explain the feeling like i'm fighting alzhiemers and its getting worse and i'm scared. I'm only 50 now, but have had these symptoms for yrs. I also have slight tremors in my head, slight twitching in my face and have become very depressed and irritable over the past couple yrs. today is a better day, which is shy i'm writing today. There are days i can't wright and have a very difficult time finding my words. I get confused very easily and stand in my closet and can't even think of what i will were and stay ion my pj's. Other days when i can think better, i can do things with ease. My dad has always been disconnected and irritable and i remember his hands shaken like someone who has parkinson. My mom and dad live far away in a differant state so i'm really not sure how they are, cuz he doesn't talk about health and hides his and mom's health issues from me and my family. I haven't talked with my family about this being something i've thought about, but have ask them questions and gotten little information. My sister also has shaking hands and extreme fatigueand irritability. Her son has autisum. My other sister has tons of health problems and is very depressed. My mom's mom and grandmom both died of alzhiermers. I guess my question is, is it uncommon that a family wouldn't know of a diagnosis of HD if it was in their family? I'm just wondering if i should let this thought go. I forgot to mention that my daughter, who is 11, has twitching in one leg, which is uncontrollable. she also had a seizure when she waws 5. thank you so much for taking the time to read this. Any thoughts for me would be deeply appreciated.

I would believe that ours is the first generation who has access to so much direct information about HD. Prior to the genetic test being discovered in 1993, many people were diagnosed just based on symptoms , and quite often misdiagnosed. Familys were also very careful about disclosing HD in their family, it was at times the big family secret. It may be what is happening in your family, but there are also other things that could be giving you these symptoms.

The Alzheimers is on one side of the family....but this could be a host of other things, including hereditary tremors (maybe you're related to Katherine Hepburn, she is the most famous person to have that.)

If it is HD, your dad would likely already be more strongly symptomatic. With him being so far away, can you speak to anyone closer to him to see how he is doing? Unfortunately, the only definitive way to know whether or not this is HD would be to consult with a movement disorders neurologist, and begin the genetic testing process.

Take your time and be careful not to just to conclusions. I can't tell you how many times we have seen a post on here where a person is convinced they have HD, and then are relieved to have it be something completely different. A little knowledge is a terrible thing. It will lead to symptom hunting and self doubt. We all have that a little, every time my kids stumble, or bring home a C in school, I wonder if JHD is rearing it's ugly head. (my husband has HD.) The only thing I can do is put that to the back of my head and live life as if it is not. Worrying won't change a thing for me.

Take care,
Patty

Welcome to the community.

You certainly have a lot going on and as Patty said it could be HD or number of things. Getting a diagnosis often means you have to sort through what you are being told in the medical community. Personally, It took a long time and it was HD. You can go to the community drop down menu and see my journey and others.

I believe in the past there may have been a large number of peomisdiagnosedosed both with HD and without. Even today unless you meet certain criteria on a rating scale and genetic testing, a definitdiagnosisosis is probably not possible. As Patty said it will take a movement specialist to find out.

Mike

Dear Patty and Mike, Thank you so much for taking the time to help me. Mike, your story made me cry. I can relate to so much of it. I've had so many dx, if i i could think, i would write a book. Thank you for sharing your story. I think i owe it to myself and my family to rule this out, as i have thought about this as a cause for my symptoms for quite a while. I know i'm losing my cognitive abilities daily and have to search for an answer while i am able. I also have the other symptoms that you spoke of. I'm not afraid to find out if it is HD. I know what ever it is, it's stealing my brain. I know it could be something else, but will need to rule HD out or i'll always wonder. I only drive short distances when i can think. I used to be able to drive, but for 2 yrs it's interfered with driving. Bless you for coming here and for sharing your story. You've been through a lot in your search to be well. I hope and pray that a cure will be in the future. Thank you..

Thank you Dazed for your kind comments. All I can say is thanks for spellcheck......Don't cry for me, there are so many in worse shape than I. It was an honor to write that for our community. It is a chronicle for those who don't know about HD and are searching for answers to their medical problems.

It makes a difference when you haven't had HD in your family. Luckily, you don't see the horrible sides effects from the past. Remember, you don't know it's HD. There are many things that could cause your problems. Things that may have a solution. I remember when diagnosed with Meniere's, people would say I'm sorry, well at least it won't kill me. Little did I know. Time is on my side though....The best advice I can give is find the right Doctor. All Doctor's are not created equal......(not constitutionally speaking of course)

It's very difficult to lose the abilities you have lost. Most try to make us feel better and it is out of kindness they do this. However, we (I) still feel they don't understand.

I'm still not clear on why you think it's HD but search for your answer and be your own advocate.

Good luck to you,
Mike



Edited 1 time(s). Last edit at 02/08/2013 08:20PM by mikee.