I asked my husband your question and read him your description in your other post about feeling like restless legs. He basically said that was a perfect description of what the chorea feels like. The chorea doesn't necessarily mean you are getting worse quickly. It is a side nuisance of Huntington's. You already know that you have Huntingtons from your bloodwork. Anxiety and stress and sleep deprby Vicky - Huntington's Disease Support Center
Very rare indeed. Im not sure if the Dr is trying to give you something else to think about or if they have seen other cases of it, or don't know Huntington's, ir just recently studied this ither issue. Doesn't seem too likely that all the other members in the family would have the other issue, especially if not all had Rhuematic fever. Not sure at all why they would even mention something otherby Vicky - Huntington's Disease Support Center
This is perfectly normal, but please look at it from a different angle. We all have gifts and talents. Some people have the gift if service and by your NOT asking for the help you need now, you are keeping those people from using their gifts to help you. Those people are still helping others, just not you, because you arent letting them know what you need. Please dont feel bad about needing helpby Vicky - Huntington's Disease Support Center
Yes seems to only be when I post from my phone...by Vicky - Huntington's Disease Support Center
First of all, there is a blood test that can predict whether or not you have this or will have this. So yes to your question. They used to just diagnose this by symptoms, as they still do for diseases like ALS and Parkinson's. Yes anxiety and depression CAN be symptoms of Huntington's, but can very easily just be anxiety and depression without Huntington's. As there is NO obvious genetic backstoby Vicky - Huntington's Disease Support Center
You dont have to leave alone, but if he has this disease, you will not have the relationship you have had nor the one you sound like you want. You can still support him and care for him. Miracles do happen to ordinary people. I understand how conflicted you are. He doesnt need to get tested to treat the symptoms, can you get him to see a Dr for the anger issues, would he take anti depressants? Caby Vicky - Huntington's Disease Support Center
Im with you guys! I was a little suspicious from the first post by this person, but just have so much trouble believing that anyone would come to a site like this to plug drugs and nikes. Just never ceases to amaze me just how inconsiderate those kind of people could be. This site means a lot to those who come here to learn more, lend advise, and support each other! Vickyby Vicky - Huntington's Disease Support Center
Dear DeeAnn, you are wise beyond your years to consider the things you have outlined. If you were married I might have a different response all together. Maybe even if you had been together longer than a year I might have a different take on this. Especially if this is completly different behavior than when you first got involved, this sounds like HD unless proven otherwise. If it is truly HD thby Vicky - Huntington's Disease Support Center
Cant say Ive noticed what you describe here, but I do know my HD+ husband will say something one day and the next day if its brought up he will say he never said it. He also misunderstands something I say and tells people I don't get "it" (hd). That I make fun of him, that I laugh at him or that when I try to help him in public, I am just doing it to draw attention to myself and that Iby Vicky - Huntington's Disease Support Center
I think this is a normal reaction, like survivors guilt. I think your family will be relieved and happy for you. I know you would love to just scream it from a tall building, at the same time you don't want to "brag" about it. You feel like you should just down play it. I get that, I guess. There are always people out there who will have more money than me, even if i win the lotto. Therby Vicky - Huntington's Disease Support Center
I understand. Just a little worried about you. I have not had to deal with the kind of thing you are experiancing, but I have heard of the jealousy and accusing (cheating) delusions. My husbands HD uncle was into that, his 4 th wife finally left him. He was diagnosed shortly after thar. Not sure I would feel any different than you! I hope the Dr can help you sort it all out. I just think there hby Vicky - Huntington's Disease Support Center
Chris Gomez- that's who my husbands uncle saw and was diagnosed through. Think hes at University of Chicago, but don't quote me on that part... Vickyby Vicky - Huntington's Disease Support Center
No this is the first I heard of this story. I know it's got to be so hard, but just keep reminding yourself this is Huntington's not the man you could have had a normal, rational discussion with. So very confusing to look at him and see the same face you once couldn't live without! I think he needs to get on some meds, and you to if you aren't already! What would happen if you just left him at hoby Vicky - Huntington's Disease Support Center
You are so right on about that, i have decided when the rants start I just pick a spot on the wall and stare at it, saying nothing and then when it stops, I just get up and go to a different room, usually to bed. When I go to the spare room, he says I'm acting like a 12 year old (lol). It really has gotten better here with a change in meds, so I'm hopeful, but cautious. Sorry you are having to doby Vicky - Huntington's Disease Support Center
You can put his money into a special needs trust that is exempt from having to qualify for medicaid. Depends on how much he has and jow much he is getting. They typically deny SSI the first 2 or 3 times, just to make it as painful as possible! Our disabilty insurance people have attorneys who specifically handle that as a way of reducing their benefit. Some people in our support group have had toby Vicky - Huntington's Disease Support Center
So sorry for the loss of your Dad. You are not alone here with your fears! Sounds like he went downhill rather rapidly and that seems to be a blessing, even though you are never really ready to say good bye! Please still know that there is still a chance that you DO NOT have this disease and until you confirm or deny it, you will be peeping around every corner trying to decide if " this is iby Vicky - Huntington's Disease Support Center
My husband had severe chorea for four months prior to finally getting xenazine. It has controlled his movements, and when it wears off they start again. The xenazine does make him very sleepy which leads to naps during the day and then he's up a lot during the night. Still working on his dosages, and his sleep pattern, but for the most part it has really allowed him some normalcy! Priot to startiby Vicky - Huntington's Disease Support Center
We saw the documentary in Dallas a few months back. We took the whole family and a couple of friends along, thinking there would be a possitive message somehow about people living well with HD. Sadly I have to say I was fairly dissappointed. The title is a bit misleading and in reality means the disease is alive and well, not the patients. This movie did bring some attention to the disease andby Vicky - Huntington's Disease Support Center
Totally understand your regrets, but Huntington's has a mind of it's own and you would most likely still be going through the same symptoms whether or not you tested. It is a lot for an 18 year old to process and I am so sorry you are having to deal with it. That said, you should not try to make these decisions alone! Moms worry, that is just part of the package! You need to share this with herby Vicky - Huntington's Disease Support Center
We also live in the Dallas area and attend a support group in Plano Texas, would love to see you come. We meet on Monday nights once a month! Very helpful to hear others going through the same types of things.by Vicky - Huntington's Disease Support Center
Sounds like you did the right thing. This behavior is quite common and I imagine the homeless shelters and streets are filled with people like your sister. They get written off by their families, society has no clue how to deal with them and Drs don' t know how treat them! They get caught up with the only crowd who "accepts" them, which can also be people who don't understand that thisby Vicky - Huntington's Disease Support Center
Thank you so much for the prayers! And the virtual hug! I'd hug you back for sure! You have been in my shoes and you know exactly what we are going through and I am so thankful that you guys share and allow me to share here! This format allows us to say the ugly truth as we live it, the things other people just can't possibly understand and the things that sound so callous to say out loud! I jusby Vicky - Huntington's Disease Support Center
I dont take issue with anyone who protects their children and themselves! I am sorry for anyone who has to deal with abuse. I understand it is not their fault, but it isn't ours or your kids either. Such a cruel disease. It robs you of everything. I am not suggesting divorce for everyone, and I like to think we all go the distance, but when violence is involved, with or without HD something has tby Vicky - Huntington's Disease Support Center
This is very typical of HD-sometimes the first real noticeable symptoms. Starts to become hard to separate the disease from the person you knew. There are meds that can help, but not totally eliminate. Sorry you are dealing with this, I am in the same boat and trying very hard to just not take it personal, however, it still breaks my heart and it's a bit unpredictable. One day I say something anby Vicky - Huntington's Disease Support Center
yes throat clearing, sniffing, grunts, moans can accompany HD. side note(Complex Central Sleep Apnea is a brain thing,) not sure it is related to Huntingtons-or same part of the brain...by Vicky - Huntington's Disease Support Center
That is the best we can do!! My husband has this nasty disease and we are getting the word out and raising monies and participating in studies, which will be very important for those at risk in our families! Thank you for your part! Vby Vicky - Huntington's Disease Support Center
Welcome Bella-so sorry you are all dealing with this and the loss of your mother. I'm also sorry "it's not something we talk about" You can come here anytime and talk about pretty much anything on your mind. Very helpful people, some HD positive, some at risk and some caregivers all with different journeys. I am caregiver to my husband who was diagnosed with Cag 42 and has full blownby Vicky - Huntington's Disease Support Center
Indeed, a special thanks to my husband who served 8 active and 22 reserve for the US Navy. Now battling HD. So glad he was able to have the experiences he had and wonderful memories. So proud of him then and now!by Vicky - Huntington's Disease Support Center
Anxiety and depression are two of the biggest symptoms that can appear, due to where the disease attacks the brain. Meds are extremely helpful. Sorry you don't feel supported by her family in your discovering more and more issues that could most certainly be caused by this destructive disease. Certainly if she has the disease, there will be no denying it at some point. Hang in there-glad youby Vicky - Huntington's Disease Support Center
So Sorry RJ-praying for a smooth transition for all of you!by Vicky - Huntington's Disease Support Center