My husband goes through periods of anxiety about the possibility of having HD (especially lately because his father receives his test results in a month).

I am getting a bit worried now because he is convinced that his father has HD (due to his father's violent temper and paranoia over the past 15 years) and that he too has HD because of symptoms he believes he has (he spends a lot of time on the internet reseaching symptoms).

Some of the symptoms he claims are: numb tongue leading to slurred speech, weird feeling in right foot all through the day and into the night, slight muscle movement in light sleep, random slight finger/foot twitches involuntary here and there in particular while falling asleep or waking up, word confusion when speaking sometimes ........

I try to calm him down but he does not listen - is there any truth in his concerns?

Thanks again for your support

All of those events could be caused by something else, including his vivid imagination. There are a number of folks on this message board who were absolutely convinced they had HD and the symptoms it causes, who tested negative. Perhaps one of them will post. Tell him to calm down and wait for his Father's test results. He may have nothing to worry about.

Will

Thanks Will. It is good to hear you say that...that was my thought that it was his imagination but he feels he is having these symptoms. I am wishing the time away till we get his father's results.

Unfortunately, we both think his father has it but are hoping for a miracle. His dad has suffered since his 20s/ealy 30s with psychological problems, paranoia, aggressive, threatening suicide. Since he has been on medication his psychological condition is much better and he is much more mellow (now in his 50s). From a cognitive perspective, how do I say this her is not the best at organising numerous issues like healthcare and day to day stuff etc all at once he needs help - but then again my father is not at risk and he is not one for paperwork neither. He does not have any physical symptoms. I guess only the test will tell. We are concerned though that those are symptoms of HD, how else could they be explained I guess is our concern....

Thanks again.

I have learned from personal experience and from reading this forum that there is no way to know without the test - every symptom can be explained by something else "is he depressed because he has HD or depressed because he thinks he has HD" etc. Try to be patient now and see what happens with his dad. Even if his dad is positive doesn't mean he is. For us the time to test was when not knowing was making us nuts. Also, when my husband tested positive as hard as it was to accept we were at least able to have some answers and we could beging to proactively address the situation.

Good luck!

Thanks Hope2 for your post. My husband did say to me recently that if he took a test and found out he was positive on the plus side he would hopefully be able to get involved in research for a cure. Is this something many HD positive people tend to do? Is it open to a lot of people?

Thanks Hope2 for your post. My husband did say to me recently that if he took a test and found out he was positive on the plus side he would hopefully be able to get involved in research for a cure. Is this something many HD positive people tend to do? Is it open to a lot of people?

Yes! It is a wonderful thing to do. We tried to get my husband involved in a clinical trial but were discouraged by the HD clinic that we went to - in retrospect I am frustrated about that because that medication is doing very well and people who participated in the study can get it while it goes through the process of FDA approval.

There are so many things in the pipeline and they are always looking for people to participate. It is great that he want to participate...

LJH - I am one of the ones who thought for sure that I had HD before I tested and tested negative. I was experiencing tics in my face, particularly around my eyes, a stiffness that came and went for brief seconds in my neck and face when trying to open things or carrying heavy items, losing words and inserting the wrong word, forgetting how to do processes in my computer programs that I have known how to do for more than 15 years, leg movement while trying to fall asleep, and insomnia. Amazingly enough, once I had the test and before I got the result, everything just stopped. I was already making plans to get into the trials and be as proactive as I could to fight the HD and then whoosh....I suddenly tested negative. While I was extremely relieved, part of me was like what??? So, the mind can truly make the body think that there is something really wrong. I still lose words or insert wrong words and forget how to do stuff, but it's because I'm getting older and brain cells are not cooperating! :-) So, hang in there, sometimes when you expect the worst you actually get the best!

LJH:

My husband also tested positive. He has a CAG of 42 and recently turned 40, we have two children at risk. I have a tendency to symptom watch as well, however, I know he has the gene. What I don't know is---is it HD? We will be seeing the doctors in September and I keep a running list of concerns in my head to discuss with them them. I am learning it is one day at a time and that what I think could be HD could be soemthing unrelated. My father has prostate cancer and recently was scheduled for an MRI (he received the appointment in the mail) which was not routine. He had had a pain in his hip for some time (aching) and connected the two. He was very anxious. When he called the doc to reschedule his appointment (for earlier) the nurse did not understand because he hadn't been scheduled for an MRI. Upon looking at the paperwork, he realized he had someone else's appointment letter! His doc spoke to him about the aching and referred him o his gp saying that it was not related to his cancer. So, you see sometimes when we want to find things it can cause us great stress. If your husband tests positive (and that is an if) you will be able to be proactive. My husband is "all for" anything he can do. He is on Celexa now, (not part of the trial) and when we talk about it both at home and with the doctors, he is willing to participate in anything that he is eligible for. Meantime, I try to stay in the day, plan for the future and enjoy the family I have now. Somedays are harder than others. But if I consume myself with worrying about what is to come I will miss out on the beauty of today.

I think the movements as you're falling asleep have their own name, and everybody can have them! (It's been asked before). I've never heard of HD making someone's tongue NUMB, or a single extremity feel wierd; I think mid-later stages just make it difficult to control muscles.

Sounds very doubtful to me that these are symptoms.

But you know what? If they are not negatively affecting his life, it doesn't really matter whether it's way-early/pre-HD or not.

Hi
I am also someone who was totally convinced I had HD and tested negative. I still find myself wondering at times if they made a mistake. It can consume you and it is wild what your mind can do. My husband threatened to take the computer on me if I didnt stop googling symptoms.

I had twitches all over for years, I could not focus, bad mood swings and once while driving I had to pull over because I wasnt sure if I was on the right side of the road. I would just blank out at times. I actually tested and did not go for my results cause I was so convinced I had it and I didnt think I could handle hearing it officially. It was almost 2 years after testing when I thought- i better get them so at least I can be proactive and get in a drug study and fight it. (I almost quit my job because my anxiety level was so high as I felt people were watching me twitch- that is how bad it was).
When I was given that negative result- I was in shock- that was just last October. I still have to remind myself it is true. Now I hardly notice the twitches, I am able to function once again. The fear of not knowing over takes you and it can do nasty things to your mind.

Good luck with your decision on testing- we are all here if you need us.

Stella, just wanted to say, your experience is very important to share here, and I'm thankful you still come to the forum, even though you are negative.

Thank you all for your posts. I find this forum so helpful, thanks to you all.

Just to throw in a counter claim here I had randon twitching and i have a numb big toe that moves from side to sode and othe wierd stuff... and i tested positive!! (CAG 41)

However I will still never know if I may have had all of those symptoms and tested negative.

Those of us with the CAG expansion probably blame a host of "being human" type blips on it when its nothing to do with it.

I found when i was caught up in the have i /havent i not very nice place where i was very stressed the best thing for me was relaxing meditation reading etc anything to give my OCD about the illness a break. Since testing positive I have a sense of relief and Im in a better place than I have been for many years.

All the best

Lorraine x

Alice- I am here everyday still praying for all of you who did not get a negative result. I still cant understand how I got it and have to remind myself daily. I am going to keep fighting for everyone- including my brother who is in the end stages.

It was this community that got me through my anxiety and fears last fall- I was frantic and it was thanks to everyone here that offered me comfort and understanding that i was able to get through it.

I do believe there is going to be amazing breakthroughs in the next 5 years and we just have to keep fighting.

You are all in my prayers.

Anyone else been in this position and come out negative?

"His dad has suffered since his 20s/ealy 30s with psychological problems, paranoia, aggressive, threatening suicide. Since he has been on medication his psychological condition is much better and he is much more mellow (now in his 50s). From a cognitive perspective, how do I say this her is not the best at organising numerous issues like healthcare and day to day stuff etc all at once he needs help - but then again my father is not at risk and he is not one for paperwork neither. He does not have any physical symptoms".

Time goes slow and this is to my father in law's test results - can't imagine what it will be like if my husband gets tested....

Many of the people who've come out negative, stop coming here, or come less often! (One that comes to mind; I think her screen name was AgainAgain, got good results a little over a year ago after describing lots of potential symptoms including twitches). But there are definitely plenty of them. You may have to search the word "negative" or "results" in subject lines.