Hi everyone
Just wondering if any of you with chorea recall how it started? Crazy question? Did you feel like internal twitches for awhile and then all of a sudden full blown movements?
I have had these internal like pulsings for 9 years and sometimes I think my limbs might jump but they dont. It is like constant pulsings all over my body and I cant stand it. My genetic doctor thought it was like benign fasiculations caused by anxiety but I have had it continuously for years and I have not always had anxiety- just periods!!!
I am just thinking this twitching is like something is wrong and it is the start of chorea? Has anyone else experienced this?
No one can notice but I feel them. I am just waiting for them to become full blown movements and Im scared.

Stella I wonder if Alice might be able to help you with this problem , i hope she reads this post . db

Thanks, Do u know if she had this symptom? I am a real mess! I just dont know what to think anymore.

I am not sure but I feel that she wrote something similar a while back . db

Im sorry I am just having such a bad day today. I can go days without letting it control me and then I hit a wall and I cant stop thinking about it and I think of what i have done to my children and I have such a sick feeling in my stomach.
Why I chose to go about life like I was normal and have 4 children without even thinking about it- I dont know what I was doing. I am so angry with myself.
I am terrified. I dont know what to do with myself. I know my results are waiting for me but I think if they tell me I have it I will just fold. I dont think I can handle it right now. Yet listen to me- Im already a mess.
I am so sorry for all of you that have gone through this. This is not fair. this is truly cruel. I cry thinking of all of you out there that feel like i do. I dont know how to be strong sometimes.

Stella, what kind of support system do you have? Try not to read too much into "symptoms". I was bumping into walls, had trouble speaking, dropping dishes, etc. That's why I needed to know. The not knowing was making me crazy.

I've been bumping into walls for years.

I try not to read too much into "symptoms" because I've had "symptoms" for many years.

The twitching? Since I was a small child
The balance problems? Since the first time I heard of HD - back in 2005, and it hasn't gotten any worse since then. (In fact, I don't rock side to side. I sway forward and back slightly). And my balance really isn't that bad, it's just that when I'm walking, I feel like I'm not walking in as straight a line as I should. But,if push came to shove, I could walk the straight line a police officer would ask.

Hi stella, yes I have similar symptoms as yours, feeling movements inside myself, which are not too visible to others, though more so than they used to be. People now notice that when nervous my feet and arms wiggle a bit. If they are observant they might see that I have to gently touch walls to keep upright while going down a hallway. And this has been true for more than 10 years. I also wonder if it will change suddenly. My dad was just a bit wiggly for years, and then for about 4 years I didn't visit him because it was hard to travel. But the time we did go down to see him, I watched him coming into the restuarant and he lifted one foot way high and he sort of fell forward as he walked, only just catching himself. That was when we all thought he had had a stroke. It was only several years later when one brother began to have lots of chorea that we realized it was the "family disease." I wonder why my dad, one brother and I have had slow progression, yet the one other brother progressed very fast, had lots of chorea, and died after 10 or so years.

thanks for your replies
I just cant believe this is happening- it is so hard to face. I have felt for so long that I have it due to these twitchy things I feel all over and I just keep plugging away acting like (on a good day) it is nothing.
swgirl- my support system cant really talk about it (husband). When I bring it up I cry and he just says really nothing but he does listen. I dont think he can handle it and that scares me too. My friends just say, " i have twtiches too, i forget things too, etc...." "You could get cancer tomorrow so why worry." They just dont get it.
Anyhow, i dont know how you get through this, I am so scared.

Hi Stella - I understand how you are feeling. My husband and I knew he was at risk but just kindof denied the reality that it could be OUR lives. We went ahead and had 2 kids and he was diagnosed 1 year ago.
The guilt that we could have passed it on to the kids is horrible and shared by many on these boards. What keeps me going is hope - if we can avoid JHD I do believe that by the time my kids are adults, if they have the gene, there will be a treatment for the disease. There lives will be complicated by it - meds, pre natal testing, etc. but that is a small price to pay.

If you have it there is so much hope too. We had to have my husband tested because it was making both of us nuts - is this HD or is this just him, is he depressed because he might have it or is he depressed because he has it etc. Once we found out (what we already believed to be true) a lot of the stress actually dissipated. He is taking supplements and is doing great. If you do have it, like my husband, you are very early. There are things you can do now and treatments around the corner. If you don't want to test you can still start taking some of the supplements - Fish Oil, Bluberry, Creatine... good stuff for anyone to take...

It is a difficult process - there is life after diagnosis and, in most ways, it is no different than life before... I hope this helps - I don't mean to make you feel any worse - I hope I haven't...

stella Wrote:
-------------------------------------------------------
> Anyhow, i dont know how you get through this, I
> am so scared.

I totally understand about being scared. I laid the groundwork for my support system (church, co-workers, friends, family) before I went through my testing. My boyfriend of nine years agreed to go with me when I had my blood drawn and my best friend went with me for my results disclosure. I asked my doctor to put me on Zoloft for the duration, and it's working so well for me that I will continue to take it as long as I can. It's hard for some, like your husband, to discuss this because it's so hard for them to wrap their brains around the full gammet of emotions that can be experienced when going through this process. My boyfriend, as supportive as he is, looked like a deer in the headlights when I tried to talk to him about HD.
Depending on where you live, there light be a local HD support group in your area. Here is a link to the HDSA webpage:
[www.hdsa.org]
Just click on your state to see is there is a group close to you. In any case, these boards are your best support, in my opinion. There are people here who are living with HD every day, whether they have it themselves, are a caregiver for someone else who has it, or have gone through the testing process themselves. Lots of love and suport to be found here



Edited 1 time(s). Last edit at 10/18/2010 08:07AM by swgirl.

stella,

I know just how you feel....I am so so sorry....you have received a ton of support and advice, so I don't have anything to say that has not already been said. We are alike in our thoughts...your feelings could have been mine! You are not alone!

take care,
Krista
You are always in my prayers.

My understanding of benign facisiculations are that they are like pulsations of the muscle, when you observe the muscle, it looks almost like a heartbeat. If you look at the muscle closely you see this and you feel it inside, but to others it is not really visible usually. A good example that most are familiar with involves what happens with the lower eye lid, when very tired. Fasiculations do not move digits or limbs. Many people have benign fasiculations and they can occur over the body and can be worse with stress or caffeine. Chorea on the other hand, involves random uncontrolled movements of the digits (figity-like look in the hands), movements of the arms and legs. Others can see these movements. If your digits/arms/legs are not acutally moving with theses "twitches", then it sounds more like fasiculations.

Thanks everyone- Kelver1- it is like fasiculations, my digits dont move and it is just muscle pulsings that sometimes are visible when you look at the area but it is constant everywhere on my body. So i was just wondering if some people had these and it lead up to chorea? Like is it my muscles breaking down and then suddenly one day I am going to wake up with chorea?

I have tried to give up caffeine and I am not stressed everytime I have them. They just are continuously throughout the day all day. I mean like every few minutes i have them- not joking.

I am not sure if i have any other symptoms- I am forgetful at times, I can become obsessive with cleaning my house, I have mood swings and I say things to my kids sometimes that I cant believe afterwards.


I dont know if it is because of my life- 4 sons, a Downs Syndrome sister who lives with me, working full time as a nurse, managing the care of my 52 year old brother in the end stages. I dont know.

I know the only way to know is to get my results and I really need to talk to my husband more about it. I dont know if I will cope well with the results but I need to make sure no matter what he will be able to cope because he may need to take a lot of our responsibilities over. I take care of everything in this house including the finances and bills. i worry if I have it he will think everytime I make a mistake that it is HD or he will have to watch me driving or how I am with the kids, etc... I dont want our relationship to change. It really scares me.
Also, I have a son with attention deficit disorder and a son with "childhood epilepsy" who just started having seizures last year. I had a bit of a nervous breakdown when that started but the doctors reassured me that that is all it is. However, how do they know- what are the odds that my kids could have early symptoms?? I know that can happen in some families but Im not sure how common. I look at my boys and think- please God just give it to them when they are older and hopefully there will be a cure. I am so worried.

I thank you all for replying and all the posts are helpful even the ones that experience the same thing and are positive. I need to hear that and face reality. i will talk to my husband about going for my results. I am a mess inside and I dont know how much longer I can go on like this. I didnt even go to work today because I am on the edge.

I will keep you posted. Thank you.

Stella, I just hate it that you have to go through this, or that anyone has to go through this. I wish I could make it better and I can't, not now, but I firmly believe that all of us together can make it better in the future and that we will.

You have been a strong person all of your life -- you got a nursing degree and you take care of your brother and your sister and your family and you are juggling a whole bunch of balls in the air. You can handle a positive test result. You won't like it and you'll need time to grieve it and adjust but I would bet the farm that you'll come out fighting. Do NOT think that if you test positive then you know your future. It is not predetermined.

Think about Will. What if someone had told him twenty-five years ago that he had the marker for HD (this was before the gene test) and he had thought oh my God, there are no treatments, we don't even know what goes wrong with HD, there's no hope for me. But in fact, here he is in his 60s, retired, enjoying life, in a happy marriage, helping the community through his posts and articles and staying proactive with exercise, supplements, and a good diet. I've met Will and he really IS doing great. Thank heavens he didn't waste the time he's had in anxiety or depression.

Think about Barb and Alice who are symptomatic. And yet they have sought and found ways to cope and medications that work for them. They too are a real gift to our community.

HD today is not experienced like HD a generation ago. And it's getting better with medication all the time. We just need to keep fighting for disease modifying treatments.

You will probably have to educate your husband about what you need from him in the way of support. He's a guy. He thinks he should be able to fix this for you and since he can't, he doesn't know what to do or say. So you'll have to tell him. Specifically. What you need to hear and what responsibilities he needs to take on. And then let him see that those things do make a difference to you.

Either way, positive or negative, you can do this Stella.

I like that encouraging post, Marsha, and thanks for mentioning me. (smile)