Hello everyone. My husband is 28 years old and has his first appointment with a neurologist April 11th. He has not been diagnosed with HD at this time and for the record there is no known family history of it. However, his paternal uncle had similar symptoms, but committed suicide almost 1 year ago. Symptoms he has had do fit in line with HD: first and foremost: chorea. A psychiatrist noticed it about 2 weeks ago during an appointment, and stated he needed to see a neurologist. I have noticed it for about 1.5 years now.. but thought it was a side effect of his psychiatric medications- he's been diagnosed with nearly everything under the rainbow from bipolar to borderline personality disorder to anxeity and so on... We have since learned from 2 doctors and his pharmacist that none of the medications he is on have chorea listed as a side effect. He's confused often, forgetful, has very extreme outbursts of anger, panic and depression. I am barely hanging in through all of this. I have a five year old son and this is all so damn difficult. My question is this: Does anyone on this forum have or know someone who has HD with no known family history? My husband is changing from the man I married into someone else.. I just want an answer and the wait is excrutiating. His parents seem to think that he won't have HD because of the no family history issue, but I've read that it IS possible. Thanks everyone.

So his parents are alive and well? Any behavior problems there? Which side of the family was the uncle? Father's side or mother's side? It already seems unlikely but not impossible it's HD... usually a child doesn't go deep into HD like you are describing before a parent. To be frank.. for every rule there is an exception.. so there won't be a great answer to your questions but we can deal with likelihoods.

Both parents are alive and well. His uncle was on his father's side. I'm know I'm not going to get an answer until we see a specialist, but the wondering and waiting are not easy, as you can well imagine.

Yes I can imagine. The safe money is on it not being HD. I could put together a scenario where it might be but that is pointless. Since he is struggling with no explanation I think this is more a test to rule it out. There are other diseases which mimic HD pretty closely. Tests for a lot of things are pretty excruciating while waiting. Ya just have to. Sucks. The answer is yes... there can be a chance HD runs in the family that people are unaware of. My wife's mother and aunts and uncle didn't know because their father left the family and never returned before he was never diagnosed. But you have a father right there who is not symptomatic. That's a biggie right there. Are your father-in-laws parents still alive? Did they have any difficulties?

Kate,

There was no known history of HD in my family. I am one of two children and we both have the gene. By process of elimination it had to have come from my father. He died of cancer at age 58 with no physical HD manifestations. He did have what may have been psychological symptoms - aggressive behavior fueled by alcoholism. The family always put that down to his experiences in WWII, but it might have been HD.

As Eric said, there are numerous other things that can mimic HD. I hope the doctors find something that can be fixed.

Will

My son had the symptoms that you describe in your husband. He was certain that he had HD….so sure that he did not want to waste the money to test. At my insistence he did agree to test and was negative. If you’re interested, you can read his story here. [www.ruledomain.com]

Thanks for taking the time to answer and respond.. I appreciate it more than I can say. The reason we have discussed HD as a possiblity is because his psychiatrist first mentioned it. I should explain, I am not a layman when it comes to medicine. I am not a physician, but I am a nurse. I was surprised at the mention of HD, simply because there is no known family history. When my husband's uncle died, he was under the care of a neurologist- but we have no idea why. He had mentioned having "tremors".. which were evident when you saw him. His handwriting had deteriorated, and he had numerous psychological issues as well. My husband's grandmothers are still alive, but both of his grandfathers died years ago. His grandfather on his mom's side was an alcoholic that died of cancer. His grandfather on his father's side died from cancer as well.. he was known as having a bad temper- prone to outbursts and downright mean. They were both in their 60's when they passed. I have NO idea what will come of all of this.

I apologize for being here on this board, because in a way I feel like a bit of an intruder. We have no diagnosis yet, just symptoms that seem to match up. I can say this though: this is a WONDERFUL community. Being in healthcare, I know how important support from other people is... sometimes more valuable than anything... for the patient and the family. Thank you all for having this resource available.. it is beautiful to see everyone supporting each other.

I don't think an apology is necessary and you are certianly not an intruder. Welcome to the forum and thanks for posting. Be sure to keep us updated if you can.
P

It could be that your husbands father does carry the gene. His father could have the HD gene however his repeat in the gene may be such that he is not sympomatic yet. Your husband may have inherited an expanded repeat. The blood test for HD hasn't been around that long.

What I've found out in my husbands family (all the men on his father's side) appear to have had HD. None were tested. HD used to be the disease that families didn't talk about so everyone just swept it under the rug. Now this generation is addressing it head on and testing.
We were going through what you have described 2 years ago. When my husband was given the positive results THEN the family agreed that this disease must go back a few generations.

My husbands neuro took 42 vials of blood to rule out anything and everything. Don't assume it's HD just yet. Some of his behavior problems could be the stress of worry too.

This is a tough time for all of you and many of us here have felt your pain and frustration. Its not going to be easy to wait for the results but right now all you can do it take things one day at a time. Keep us posted. We love to hear good news and will do all we can to support you if the news isn't so good either! BTW...most of us did join and post on the board before the test results were in at the first mention of HD, so don't apologize!

No need to apologize at all - this forum is for issues related to HD... and that is what you have so you are in the right place... It does seem unlikely given your husbands parents and grandparents longevity... but it is possible. The waiting is so hard - so difficult not to have answers. When my father-in-law was diagnosed @ 58 years old it came as a total shock to everyone but his parents had passed - we still don't really know where it came from. best of luck - and keep posting - if he is negative it is great to have good news here and if he is positive this is a wonderful place for information and support. good luck!

My husband came from a large family and there seems to be no other case known. However it had been suggested that possibly there might have been prior cases which were on the 'cusp of HD' and a mutation of the gene occurred at his conception which manifested into full blown HD. Read up more on the possibility. I think that you could find some info on the Lighthouse.
That being said it could also be something different but just manifests like HD. Try not to jump to any conclusions.

I definitely think you are in the right place. This is where many people come to while waiting for test results for HD. I don't think the toenail fungus board is a good fit though.. I just hope you aren't here long. But we are here if need be.

Hi Kate,

Best of luck with your husband's tests. Whether or not it's HD, I hope they can give your husband a diagnosis very soon, as it sounds like the situation is getting very stressful for you all.

Thanks everyone! You all are so great.. one of the few times I've had a smile in the last few weeks! I will stick around and let everyone know about his appt on the 11th. He has an appointment tomorrow with our family doctor because of muscle pain from the chorea. Hopefully he can give him some measure of relief from the pain for the next 1.5 weeks until the appointment.

Hi Kate,

My husband was also diagnosed with no known family history 3 years ago. I am so grateful that I found this forum. There are wonderful people here and I honestly don't know what I would have done without all of the great advice and support that I have received. You have definitely come to the right place!

I 2nd that sentiment. some of these things - issues.feelings etc are impossible to communicate. you come here and not only do people understand but they are living it too - or have gone through it already.... it is a support that you just can't get anywhere else and it is remarkable how much it helps.