Hi all!

Just wanted to do my first post here and let you all know who I am and I am always looking for good experienced advice!

I am 28 years old, and a work at home wife. My husband and I have decided together that I would like to begin the genetic testing/counseling process so that I can know what my chances are...my father has HD and I am 1 of 2 children. My brother does not wish to get tested. I decided that before I try to concieve and start my own family I want to get tested. I understand the positives and negatives of it. For the past few years I have been terribly nervous, anxious, agoraphobic, terrible mood swings and depressed. Had I not had these symptoms I most likely would not be thinking about getting tested, however I really do want to know and make the most of things.

I would love to know about how you went to go and get tested. I would prefer it to be private (not through my insurance or family doctor), and me pay out of my pocket myself for it so that I reduce the chance of my insurance companies finding out.

I've lived with the worry for so many years, I feel like I just need to have that answer...even if it is inconclusive or negative.

Let me know how your experience was...and what you would do differently if anything? What type of place did you go to get tested at?

Thanks for any advice and nice to meet you guys!



Edited 1 time(s). Last edit at 01/02/2009 10:09PM by cerdar1980.

welcome...I'm new here too! I'm 33 and about 10 years ago, while newly married, working full time and going to school full time, I also had extreme anxiety, it then went away and came back about 3 years ago and now is gone again, however my dad was just diagnosed, so I have been stressed, but know how to handle it better. My mom had anxiety attacks and I never understood what she was having until I experienced one. Not fun! At this point, I have decided not to be tested, because I would be too worried if I turned up positive...just waiting for symptoms to show up. I'm not saying your decision is wrong, in a way I wished I would have known before I had my kids, even though I can't imagine not having them. They are so precious to me! Glad your here.

Hi there and welcome. The decision to be tested is indeed a very personal one, and everyone here has different reasons for getting tested, or not getting tested. Only you can decide if you can handle the truth, or handle the suspense.

My Dad tested positve 3 years ago, we had never heard of HD before. All 4 of us children had families of our own, and was a major bombshell for us all. We have all handled it in very different ways - I immediately needed to be tested as I was about to make life-changing decisions - not as serious as starting a family, but quitting work to start a business, relocating to another town and thus changing kids schools and their social support networks. During that horrible 6 month process, you are convinced that you are suffering every symptom of HD possible. Although I tested negative (thank God!), I still have the symtpoms and believe they are learned behaviours and reactions to stress from being bought up in a HD family!

Since then my sister and 1 brother have both tested positive, my other brother pulled out of testing at the last moment. Extreme anxiety attacks, depression and nervous twitching are HD symptoms, but they are also stress symptoms. If you are continuously symptom hunting, I understand (I still do) but it really is like guessing if you're in labour - trust me you will know when the real labour pains start! Anything else is all just speculation and not helpful in the long run.

As for whether or not you have HD, that depends on whether you picked heads or tails at conception. I typically picked the wrong one for everything else in my life, but for some unknown reason, I got it right at conception! Just like if you are a boy or a girl, you have no choice in the matter and it doesn't reward past bad or good behaviour! It really doesn't make a difference if you were the meanest sibling, the sooky sickly one, or the goody two-shoes, whether you stole from the shops or slept with your sisters boyfriend. It only matters which straw you picked at conception! It isn't fair, it just is! And there is nothing you can do to change it, no amount of begging or pleading, no amount of money or charity work. You either got heads or tails, just like you're a boy or a girl. It just isn't as obvious as looking into your pants!

How you react to your results is a different issue altogether. Obviously if you are looking for reassurance to start a family of your own, then a positive result will be devastating and you will feel like your dream of motherhood has been taken away from you. Please consider other options and be comfortable with your decision before you get your results. Have a plan B ready to go - whether it includes IVF to exclude the HD gene embryos, adoption or donor egg programs, please do not have your heart so set on one way that you are totally devastated and no longer wanting to live life! That is the worst situation to be in and no-one wants you to go there! There are other options, and you need to be prepared to accept them as your best options should you need to.

Learning to live with HD should be about living with HD, not learning to accept life without a family or without the hopes and dreams you have right now - it makes it a bit more difficult, but there is life after diagnosis and that life can be very fullfilling and rewarding and it can include a family. I do believe we will see effective treatments in our lifetime, and especially in our childrens time. There is always hope! I hope you won't need to experience what my brother and sister have gone through - I really hope you have a happy ending at the end of your story! Good luck and keep us posted!

Hi and Welcome
Keep reading Shy's response. I have never read a more thorough honest response to this question. Though I am a male in my mid 60's from a very large family, I went through the same issues, keep reading Shy's response, pay close attention to what she is saying.

Best to You on this journey called HD.
Ron C.

bj

Welcome, Cerdar!

You sound like a very sensible person, facing the issues of HD squarely. Prior to deciding to have children.

I have to totally agree with Shy when she says, "The decision to be tested is indeed a very personal one, and everyone here has different reasons for getting tested, or not getting tested. Only you can decide if you can handle the truth, or handle the suspense."

I personally decided to test, because I'm better with handling truth than suspense. And I too had some life-decisions I had to make.

Unlike Shy - I tested positive.

And as for children - there can be all sorts of options asside from natural birth, should you test positive. There's adoption. I personally had some very satisfying relationships with (1) stepkids, and (2) other kids I just hit it off with. One can always participate in a "big sister" program. There are all sorts of possibilities!

EVEN BETTER - you can test negative! There's 50% chance of that, as well!



jl



Edited 1 time(s). Last edit at 01/04/2009 01:30AM by jl.

cerdar1980,

I know people around here must get tired of me saying what a wonderful medical team I have, but I'll say it again. Everything goes through my pcp/nephrologist who has more or less adopted me. My chiropractor (who is now doing acupuncture on me) introduced me to the pcp. The chiro said the pcp and I would get along extremely well since we are so much alike. The pcp and the chiro both referred me to my main neuro. My psychiatrist is the last part of my main medical team.

I have other medical personnel too (optho-neuro, movement disorder specialist, urologist, gynecologist, oncologist, infectious disease doctor, vein doctor, rheumatologist, pain specialist, immunologist, etc.) At the last count I had over 40 doctors who see me. My main medical team has written permission from me so that they may discuss anything they need to without having to contact me every time they need to have a conference. Anything any of the other doctors want to do must go through the team first.

Even with as many doctors as I have, I am close to all of them. Most are devout Christians and realize the Lord is in control of the situation and is working through them. I will not go to a doctor who is not a Christian.

My main neurologist has HD patients who have moved into the area just to see her. She and my pcp wanted me to be tested to rule out HD as the cause for some of symptoms I was having. (My father was diagnosed w/ HD in his late 50s early 60s.) The doctors did not believe I had HD, but they wanted to test me to be sure.

I did not want to be tested since I had not been teaching at my new job long enough to have tenure. Even though I had already taught more than 15 years in a different county in the same state, I had to earn tenure in my new county. Until a teacher is rehired enough times to receive tenure, the school system has no obligation to rehire her or even to give her a reason as to why they choose not to rehire her. Had I chosen to be tested during this time, my insurance company which is paid for by the state and county would have known and then would have notified the school system. Regardless of the test results I would not have been rehired. The fear of the unknown and the possibility I might have cost the school system some money would have outweighed the fact I was a special education teacher with almost 20 years of experience. (Special education, math, and science teachers are at times impossible to find.)

In addition to the employment/insurance problem, I was not ready for the results yet. I believe in self-fulfilling prophecy and did not to wonder if every muscle twitch was a sign of chorea, or if every time I forgot something it was caused by HD. I was already a worrier and had OCD among many other things and knew they would play into the fear and paranoia. However, the neurologist was insistent, so I agreed to be tested on the following conditions: 1. I was not to be told the results until I asked for them. 2. I wanted her to share the information with the fewest number of doctors as possible; it would be her decision as to whom and when. However, whoever was told had to follow rule one. To get the information they needed, my pcp and neuro paid to have the testing done; thus, the results belong to them, and they can do whatever they chose with them.

I would not have changed the testing process. I have since found out my chiro and psychiatrist were the only other people the neuro and pcp chose to tell.

Two years later as I got sicker and sicker, my chiro sat me down one night and told me I needed to start asking more questions when I saw my neuro; however, I was so sick by this time with other issues that I didn?t understand what he was telling me. Even if I had asked him about the test results, he did not have the right to tell me because the results belong to the other two doctors. I do remember thinking his advice very strange because of the number of questions I do ask when I see any of my doctors. After a few days of mulling it over the best I could during my illness, I told my husband what the chiro had said. He turned pale, and after a few minutes of silence, he reminded me I had an appointment with the neuro in a couple of months and to write down any questions I wanted to know so I wouldn?t forget to ask her. In the meantime, one evening at the psychiatrist, I was rambling on about something, and she said, ?Well, you don?t need to waste energy on that because you have much more important things to worry about like the fact you have Huntington?s Disease!? I started screaming and doctors started running. I suppose they thought I was killing her. I screamed so loudly that my husband could hear me above the din in the waiting room. (Most patients there were children or teens, so there was always lots of noise.) She sent for him. I continued crying and screaming while they talked and tried to quite me.

To show you how the Lord works, for no reason whatsoever, my husband, who never misses school, had requested and been granted a personal day off for the next day. I believe the Lord was responsible for having Tracy home with me the next day. There was no way I could have made it through the day by myself.

Several people including some of my doctors tried to get me to sue her for malpractice. She had no report saying I had HD, so she was going only on what she had been told. What if she had been wrong? Before I ever went to her I had had 3 suicide attempts, had been cutting, abusing laxatives and starving myself, in addition to many other dangerous behaviors. The information she gave me could have caused me to go home and finish what I had never been able to do in the past. She is a child psychiatrist but sees a few adult patients. When I was finally able to talk to her, I asked her what if I had been a child or a teen and tried to hurt myself, or what if I had succeeded in killing myself based on information she had been told and then told me. I also told her that I had people including doctors pushing me to sue her. I had to take a break from seeing her for about a year, but did go back to see her so that we could each say what we needed to and go our separate ways. We talked, and I decided to go back on a trial basis. That was 3.5 years ago. The trust has been rebuilt, and now I wouldn?t see anyone else.

I hope this helps you or someone else. If you or anyone else has questions, I will be happy to answer them.

Teressa

Welcome to the forum , I just want to say Hi . db

I just wanted to say HI and Welcome to the foum!!!!

DCB
*Living for today*

I would recomend a genetic counselor...our MD had the blood draw for my Husband and it took two weeks for the results...he was tested in 2007...we had no genectic counseling but our three boys have had...they have chosen for now not to be tested...I am also new here...hope this helps a little

I would recomend a genetic counselor...our MD had the blood draw for my Husband and it took two weeks for the results...he was tested in 2007...we had no genectic counseling but our three boys have had...they have chosen for now not to be tested...I am also new here...hope this helps a little

Our daughter had thought about being tested but wanted it done anonomously for obvious reasons.
I asked at one of the testing centers if this could be done by giving a different name and paying in cash. She said yes and would have no problem with it.
I don't know if they are all like that but would hope so.