hello. My name is Megan. I am just wondering if anyone can describe the beginning of HD. Like what does it feel like....and so on. I have been having slight muscle movements in my hands, legs,stomach,feet, and sometimes my neck and face. It kinda feels like my muscle is twitching or slowly moving. My mother has HD and is in a nursing home, and has been diagnosed with HD for about 12 years.I can not ask her because she can not talk I have NOT been tested. I don't have insurance or the money to get tested, although I really would like to. My sister says it is because I am lacking iron and potassium due to child birth 8 months ago. BUT I am not so sure about that. Thanks!

Well I guess no one has any answers for me on this.

Megan-

where are you located? some of the Huntington's clinics in the northeast offer free testing.

i think the lack of replies is not for lack of caring- i think its more that everyone's early symptoms are different. Huntington's affects multiple areas of the nervous system, and some people feel the physical effects before the psychological and vice versa.

Have you been taking a multivitamin? that may help if the cause is not disease related and rather about being run down from pregnancy and/or breastfeeding.

I agree there, the beginning is different for each person. Some have mental issues, some movement, some a combination and each seems to be different.

I would start taking fish oil, which can help in all area of the body and especially HD.

I don't have HD, so I cannot tell you how it feels, but the early symptoms I noticed in my husband were depression, lack of motivation and he would anger easily. It was a while before I noticed any movements. I hope this helps

My Husband also started with complaints that he could not focus..felt like his memory was not as good as it use to be...very irritable for no reason...tired and lack of motivation...every thing seemed very hard for him...then he became clumsy...running into walls...and twitching...

Thank you all. I have dealt with depression my entire life. I am now on a multi vitamin I started it yesterday. I am in Alabama. I would love more info on free testing.

Hello. I am in Alabama Huntsville/Montgomery area. I did not think that ppl didnt care, I just assumed that no one had the answer to my question. I am on a multi vitamin, just started it yesterday as well as iron, calcium and potassium pills. Maye that will help. I have a feeling it is HD.

and no breast feeding.

Hi
Just wanted to tell you that my father and brother died of HD and Over the last 10 years I had myself convinced I had it due to muscle twitches that i experience all over my body- like little pulses all over in the strangest places.

I finally got tested and almost 2 years later I found the courage to go and get my results and I was negative!!!!!! I had myself convinced it was HD which i think it made all the twitching even worse
.
I still have twitches all over but they dont scare me like they used to- not at all. Look up benign muscle fasiculations and see what you think. I think that is what i have and I think it is due to stress. The stress of being at risk can do wild things to your mind.

Im so sorry you are going through this.

Take care

My mom had HD. I have not been tested yet, but I think I have HD. Everytime I move oddly, I compare it to movements my mom did. Or facial expressions. Or if I think I'm being compulsive. It's amazing the things your mind does.

I am going to get tested soon, too.

Stella I am SO HAPPY for you! I have that too, I freak out over everything. But I am convinced I have it. I feel like I can not escape this fate. I will look it up thou! I am thinking about contacting some genetic testing centers. I am also trying to find out what my mothers CAG count was. I think that might help. She had uncontrolled movement but more mental issues. When she could still walk she was saying that she had Dick Cheney in her ear, President Bush in her nose and she would talk to running water from the faucet in the bathroom. I am not sure if that is HD and I never saw the test results for her HD BUT she said that she had HD like her mother. My sister on the other hand said that Mom was correct about having HD and that she talked to her doctor. BUT it all scares me because I hate feeling like I am out of control of my body, which is the reason I never get drunk, because I hate loosing control. With HD I will be loosing control. I can not think about it without crying. I try to talk to my family about it and they shut me out and say, "Stop worrying, why cant you just live your life and be happy and deal with it when it gets here IF you do have it, which I dont think you do!" Even my friends tell me that. My response to them is, " I THINK IT IS HERE AND I NEED SUPPORT!" But they just change the subject. I know it is hard to hear from someone you love that they think they have HD BUT I do need to vent! Thats why I am so so happy that I found this place! Thanks to all of you!!!



Edited 1 time(s). Last edit at 10/20/2011 07:31AM by papple_juice.

Cougs4you,
How old are you? I am 27 and I am going thru the same thing you are. I hope you are doing ok.

I didn't answer b/c I don't know what it feels like either. I'm gene-positive, but don't believe I have symptoms, and definitely have not noticed any movement symptoms. There have been plenty of people on here who've had twitching and it's turned out to be stress rather than hd.

I hope you can get the answers you're looking for. Of course I hope you test negative, but even if you are positive, or if you have to live without knowing for a while, I hope you can find some hope & peace about it.

thank you sara. what does gene positive mean? that hd runs in your family? i hope you are ok as well ans thank you!!

Gene positive means you have tested and do have the HD gene and will get the disease eventually.
Gene negative means you have tested and you do NOT have the HD gene and will not get the disease. Pat

oh ok thank you Pat.

I just read that they (scientists) are trying to silence the HD gene that does harm. Has anyone else read or heard anything about this??

Yep! I think they're working on silencing the gene several different ways - this would stop the disease at the genetic level. Other scientists are working on stopping the disease other ways - lots of them are focusing on having your body create less of the mutant huntingtin protein, others are working on stopping it from clumping which is when it becomes the biggest problem. Others are working on protecting the brain from damage, or helping the brain to repair itself to essentially neutralize or even reverse damage. Still others are working in ways that are too complex for me to understand easily or explain from memory. Many, many things in the pipeline, and only ONE of them needs to work!

Wow imagine that. That would be like a miracle come true. I have prayed my e ntire life for a cure or a drug that stops the disease from progressing.