My family has a history of Huntington's. My uncle had it in recent memory. My father has had the neurological testing done and passed but did not take the blood test. I don't know what his reasoning was for not taking the genetic test (fear?).

I recently got curious about the symptoms of HD and did some research. I found that I have several of the symptoms yet many of the symptoms could be explained by other things. I had a head injury in a car accident when I was 17 (I am almost 37 now) and since then have had tremors in my hands. Always assumed they were from Essential Tremor which can be brought on by a head injury but my research says a head injury can also bring on HD. I have problems with my memory but again in the car accident I had temporary amnesia and it swiss cheesed my old memories even afterwards. I have had bouts of depression and I lose my tempor more than I want to.

A couple years ago I was getting disturbing visual issues and went to see an eye doctor, a neurologist and an ENT. The ENT settled on Vestibular migraines when he discovered I had a few migraines in my history. Since then I haven't had anything nearly as bad but I still get issues separate from headaches now and then. I also have had an increase in traditional migraines. The thing is that in my research I found that HD can affect the vestibular system.

I also have felt a lot of fatigue lately which also could be explained by depression.

The point is that I have an appointment with my family doctor to discuss options. I wanted to check with those who have been there though. What should I expect? Is the testing cost prohibitive? We have insurance but I don't know if it will cover it. We can't afford much right now.

Also, should I even bother being tested? There is no cure, right? So is there any good reasons to be tested? What are the reasons NOT to be tested?

Thanks in advance for any information and advice given.

Chris



Edited 2 time(s). Last edit at 02/03/2015 03:17PM by theclosh.

Update:

Saw my dad today for the first time in a few weeks. I would be highly shocked if he didn't actually have HD. He is moving and wiggling a lot like my uncle did. It doesn't look uncontrolled fully yet but it certainly looks....restless. He was talking to me for about 10 minutes and the whole time his fingers were moving and if not his fingers his hands and if not his hands his arms would be moving to his face and back down. He crossed and recrossed his legs several times and he was rocking more often than not.

I'd really appreciate answers to my questions if someone has the time.

Thank you.

Chris,

Welcome. I won't get into all the pros and cons of testing. You could search this site on that subject and you'll get two earfuls on both sides. Your family doc can refer you to a testing center. When I tested the total cost was around $1,200 which included $300 for the blood test. Mine was covered by insurance - Blue Cross/Blue Shield. I didn't try to hide anything about what it was for and there were no questions. I did test positive and there have been no adverse effects on any of my insurances.

Some people have chosen to test anonymously and you can find out how to do that here also. The recommended test protocol includes several visits for neuro/psych testing, genetic counseling and finally the blood test. It should be done by HD people.

Will



Edited 1 time(s). Last edit at 02/05/2015 08:16AM by Will.

I read your first post and you mentioned that HD can be brought on by head trauma. Call my crazy, but I highly doubt that.

I am sorry if I got that wrong. I did a lot of research on Huntington's before I stumbled onto this site. I could swear I read on one of the many sites that I reviewed that the oneset of symptoms can be brought on by traumatic events both emotional and physical and that head injury was listed. However, I have gone through my history of sites visited and searched on Google without finding anything to that effect. Am I that wrong? Maybe I should just drop the whole thing until I start showing undeniable symptoms. It certainly doesn't appear anyone wants to give me any help outside the cost of treatment. I'm just scared.

Thanks anyway.

Chris

Okay, this is where I probably got that. The information under the section "Acquired Brain Disorder" implies that HD symptoms can be set of by head injuries.

[www.alaskabraininjury.net]

sunnyjem, yes, if someone is positive for hd but doesn't have symptoms yet, a head trauma can definitely bring hd on quicker, both me and mikee are dealing with head trauma.



Edited 1 time(s). Last edit at 02/07/2015 03:45AM by Barb.

Actually, there is a possible "cure" going into clinical trials this spring using gene silencing. Testing was one of the best things I ever did, because you can't fight what you don't know you have. And there are so many positive things that help hd, exercise, supplements, etc. And there is one medication that actually slows the progression of the disease, called memantine. I went on that and my doctors were in shock to see almost all of my symptoms reverse a huge amount. Some people have success with memantine, and some don't. I guess my point is, now is a better time than any time in history to test, because if the cure is right here, right now. For me, I was relieved to know I was positive, because I was tired of wondering what was wrong with my memory, and feeling stupid. It gave me validity and something to fight for. Good luck with your decision.



Edited 1 time(s). Last edit at 02/07/2015 03:46AM by Barb.

Thank you, Barb. That is really helpful to know. I made the decision to tell my wife of my worries the other night and she will also be glad to hear there may be a cure if I do have HD.

I have not seen my two most recent posts to this thread so I apologize in advance if the conversation starts to look distorted.

Thanks!

Chris

My bad! I thought I knew a lot about HD. lol apparently every day is a new learning opportunity

Hey Sunny, no bad here. The only way I know things is by what I've heard here, and now you know something someone else may not know Next time it will be you telling someone something they didn't know

Chris, I've been in the very early stages of hd for a few years now. But two years ago I got a very bad concussion, and since then had 2 more concussions, and been dealing with very severe post concussion vertigo, and just when I start to get better, it will get worse again, for me it gets worse if I'm in a moving vehicle, and the brakes get slammed on, then I'm back to square one with my recovery again. What I can say, is some concussion symptoms are similar to hd symptoms, and for me, and I know mikee has said this too, that the concussion symptoms and hd symptoms seem to overlap each other, and it's hard to tell whats concussion, and what's hd. And so, I think for you Chris, it's a similar situation. Because you are at risk for hd, you could just be having post concussion symptoms, with no hd, or, you could be having post concussion plus hd. I honestly don't think a neuro will be able to tell you for sure which it is, just by your symptoms, because symptoms are similar. I think the only way you would know for sure is to have the test done, and honestly, there are cures right around the corner going into trials, and so much more hope now. But the only way a person can take advantage of any research that is coming, is to have a diagnosis, in order to qualify for trials or medications. Food for thought anyways

Yes, yes and yes.....Hd can be brought on by head injury. I experience much of what you describe daily. After many misdiagnosis I was tested for HD based on history and the other symptoms and I was positive. Went through a bunch of testing prior and over again a couple of times. Don't forget HD was diagnosed long before the genetic testing was available.
Also with a head injury is the chance of irreversible vestibular damage. You post appears correct to me (although a lay person). Knowing your cag count may or may not be helpful but can only be determined by your genetic testing.

Good Luck,

Mike

that is very interesting to me about HD being brought on by a head injury......In my husband, Donnies situation, I really believe he started showing really symptomatic after he was working in the woods as a logger one very hot summer day, he dehydrated and had to be brought into the dr office where they gave him 2 bags of fluid. That was 4 years ago. If I had to put my figure on just when he started showing signs of HD, I'd have to say that was it.
Has anyone else experienced this?

Liz

Just had the appointment with my doctor. He is my father's doctor too and he said he even noticed the jerking movements my father has been making lately. He encouraged him to get the blood work done but my father is obstinant.

Anyway, I have elected to take the test. I love my doctor. He knows me and my family so he didn't make me jump through hoops doing the psychological testing. We went straight to the blood work. I had my blood drawn and now we wait.

I wanted to say that I was told the test would cost $400 out of pocket but that my insurance covered 40% so it will only cost me $240.

Anyway, praying I don't have it but it will be nice to just know either way.

Chris