53 Members
GETTING TEST RESULTS TOMORROW
We're all in there with you!12 months ago
I'll be thinking of you and hoping for the best. Keep us posted.12 months ago
I am crossing my toes and praying for you! Good luck sweetie!12 months ago
Hoping for the best and one way or another we're here with you. Good luck!12 months ago
I got the results. I have it. Deep down I knew it, but I was hoping and praying that I would be proven wrong.12 months ago
The CAG # was 45. What does this mean to me???12 months ago
Iam sooo sorry to hear that u are positve... How are you doing with the resluts??12 months ago
The Meaning of CAG All persons have two HD genes, one from mom and one from dad. The genetic measure of a bad gene for HD is a repeated genetic sequence, C-A-G-C-A-G-C-A-G ..., repeated 36 or more times. If mom or dad has HD then there is a 50-50 chance (like the flip of a coin) that each kid will inherit the bad gene. The number of repeats of the C-A-G sequence is the CAG count found by the genetic test. GOT THIS FROM LIGHT HOUSE WEBSITE http://www.hdlighthouse.org/abouthd/cag/ I'm sorry to hear about the results but, were here if you need us.12 months ago
oh, honey! I am sorry you didn't recieve better news. I know it weighs heavily on the heart when you get news like this. I hope you are alright and will be able to face this head-on. The CAG also determines how severe you will be affected and how young you will start experiencing symptoms. Naturally the higher the number the more severe it will be. Let us know if we can do anything to help!12 months ago
So about what age would i develop symptoms with a CAG repeat of 45? I am handling it alright at this very moment. Who knows how i will be later on. I told my boyfiends mom and sister in law and my dad and mom so far. I was pretty hysterical at the docs office. Now I've stopped crying. It's a roller coaster of emotions....sadness, determination, and grief all in one.12 months ago
CAG Repeat Size Median Age at Onset(years) * #39 age66 (72-59) #40 age59 (61-56) #41 age54 (56-52) #42 age49 (50-48) #43 age44 (45-42) #44 age42 (43-40) #45 age37 (39-36) #46 age36 (37-35) #47 age33 (35-31) #48 age32 (34-30) #49 age28 (32-25) #50 age27 (30-24) * (95% confidence interval) Age by which 50% of individuals will be affected. There has been more recent studies that claim that CAG counts are not good factors to go by with age onset. There are other factors that should be considered and this chart is an approximation and should not be a definitive source, but according to this, you will possibly become symptomatic in your mid 30's.12 months ago
We're hanging in there with you.12 months ago
Melinda I am so sorry about your result. I'm here crying with you. I hope you're doing ok. If you need to talk please let me know.12 months ago
So sorry to hear your news Melinda. This is not what any of us wants to hear. It's the kind of news that has to be processed. You have inbuilt mechanisms that will take you through 'stages' like grieving. Once you reach the 'resignation' stage, that is when you can just get on with it and do your utmost to live the life you have to the full. There is so much promise with research getting us to a stage where we hope to be able to stop this thing in its tracks, and even reverse the damage that may have already occurred for so many. Allow yourself the time to go through the process and keep the faith. We are all in this together...what happens to one happens to all. Sending you warm hugs. Jaycee12 months ago
thank you for the CAG info and for everyone's support. Right now that's about all i can say. i'm tired of thinking.12 months ago
Melinda...my prayers are with you. Everything happens for a reason. When you have done your duty on this earth, you will go to a better place. I truly believe this. Having HD has nothing to do with your time on this earth. Live each day to the very fullest. I wish you many more years of love and happiness.12 months ago
I am so sorry, Melinda. This was not the news we hoped you would hear. Take some time to be angry or to grieve, let people comfort you, and then come out fighting. There are ways to stay healthier longer while we wait for treatments which should be available in the next few years. Exercise, antioxidants, and an antioxidant, Omega-3 rich diet are all good bets.12 months ago
You have been my friend for awhile and I want you to know how very sorry I'm for you. I know what type of woman you are...STRONG.......Your mom needs you now and I know you will be there for her. We are all here for you and if you ever need to call...day or night please do. A ton of things are going to happen in the next few weeks....so many emotions. I really don't know what I would have done without all of you on myspace. Hey we can be HD sisters now...LOL. Ok that was bad and I'm sorry but I just can't tell you how much you have meant to all of us. You are a wonderful friend and I wish I could take this away for you.12 months ago
I am sorry to hear your news. I tested positive in August. If you need any one to talk with feel free to contact me. There are so many proactive things you can do. Once you have taken some time for yourself to adjust. I am thinking of you and your family.12 months ago
I am so sorry to hear that you got a positive result. Our prayers are with you, if you ever need to talk, don't hesitate to yell out. I felt the same way when I got mine, I didn't want it to be positive, but I knew in my heart that it would be. My result was over 2 years ago, and somedays it still gets to me. Just got to hold your head up high and continue on. We are here for you12 months ago
Thoughts and prayers from myself and my family. My husband's count was 46 at age 30......we found out on Good Friday in 2005- made for a miserable Easter, even though we were both mildly sedated- we too kind of knew he would be HD+ Take your time and take each emotion as it comes and DO rely on your support system, you need them as much now as you will later on...I also agree and believe what Joyce said, EVERYHTING happens for a reason. I am still trying to figure the whys out on my end, but, I believe and though my faith was almost shaken- its where I find my greatest strength.12 months ago
Melinda, I'm sorry to hear about your results. I remember the day I got mine and was told I tested positive--It's not easy even if you know deep down it's going to be positive. Give yourself time to grieve and accept the results, it doesn't happen overnight. Also, I saw someone post about the average age based on CAG. DO NOT necessarily think that's the case for everyone. There are people who don't develop it around the ages specified above. I know someone who was diagnosed with HD and symptomatic. She started doing yoga and taking supplements and is 9 years into the disease and not showing any symptoms now. So don't put a timeline on your life and say "Okay, I have until I'm in my mid-30's so I need to get these things done now" and then as you get closer to your mid-30's completely give up. You don't know you will develop it then, it really is based on so many other things, so please please please live your life to the fullest and don't worry so much about what age you will develop it. If you need anything, please feel free to contact me.12 months ago
Melinda, that was excellent advice from everyone so I'm just going to say ditto. My heart goes out to you right now.12 months ago
I am so deeply sorry.12 months ago
thank you everyone. it still seems so surreal, woke up thinking it was all just a bad dream. Then reality sunk in seconds later that yes, this did happen.12 months ago
Melinda, I'm so very sorry to hear your news. Allow yourself time to be angry and sad, then get positive, and live your life positively and help yourself with knowledge. Please keep us posted.12 months ago
Hello from across the pond in England. I am at risk but un tested and admire all of you who have taken that step . The one thing I wanted to add was how lucky I feel we all are to have groups such as this. So many of us from HD families have spent years feeling lonely or isolated yet we now have an extended network of friends who feel like family who understand exactly what living with HD in outr lives is like . Take care jaq ( and syb the dog who looks like an angel but acts like a .....)12 months ago
I am so sorry. I have the same CAG repeat. Quick note on that: I've heard lots of stuff on the CAG repeat, and it seems that it's actually still pretty vague as to what it means, as far as in the 36-high 40's range. From what I understand, they HAVEN'T been able to positively link it to onset-age. They have a general correlation w/ extremely high CAG repeats being linked to juvenile HD, but in the lower #s, it's just not known.12 months ago
This is the HD Lighthouse Editors Comment above the chart: "For a CAG count of 41, one person had onset at 25 years of age, another had onset at 81 years of age. Keep this in mind while looking at the table below. --Jerry"12 months ago
Melinda Honey, I am so very sorry to hear about your test results. Soon as I found out I called my mom crying telling her. I want you to know that we all are here for you. I have known that since 1998 that I was gene positive, with a CAG of 48. I want to say its not how long you have but what you do with the time you do have. I do want to say I wish there was a wonderful support system like this when I found out. We all are truely blessed for all the many things we can/are doing to help one another, this is why WE ARE YOUR HD FAMILY. We love you and are here for you.12 months ago
ok, i'm sorry melinda, but i have to give a dissenting opinion here,,, please dont take this the wrong way... THIS IS NOT A DEATH SENTENCE... ofcourse it is not something anyone wants to hear, but these are new times, and we have the best chance ever, of seeing substantial medical help for hd... there are many drugs coming out in the near future, that will treat the symptoms, and hopefully prolong life... and in your lifetime miss melinda, there may even be a cure... just think, you will be one of the first generations of people to conquer huntingtons disease in their lifetime, how amazing that you will be a pioneer when the new drugs come out... please dont let doubt and fear eat you up... you will survive this... do what you can to live strong now...:)12 months ago
thank you everyone for the cag info and all your prayers and help. Skmf, your insite is a big relief. I want to believe it that it will happen, and I hope you are right. Well I made an appointment to go to the University of WA. Don't know what they're going to do exactly, but they said just to get info, get me connected with people and to see if i want to be involved in trials. Has anyone in here done that? Anyways, I'm doing ok now for the mostpart. I told my grandma yesterday and she's really depressed. I told my aunt too, and it's just been really hard. I cried after i made the UW appointment I guess cause it just makes me realize the reality of all of this. Thank you to everyone on here. You've all been a huge blessing to me, and I know that we're not alone now. I'm so thankful to be able to count on all of you guys and have all of you as such good friends.12 months ago
melinda im thinking of you, we all know what you are going through and it sucks, and it just takes a long time to absorb all of this. we are all lucky to have this site it was so comforting to me when i found out i had it too to talk to other people who have been through it themselves. it really helps. my cag is 42 i think the best indicator is to look at family history and see when they started showing signs of it. but generally the lower the number the later i think it will happen thats my understanding. i hope you have lots of people that can support you rite now and that you just do whatever you need to do to deal with this. please email me if u need to talk.12 months ago
melinda--I am total agreement w/skmf--I am a gene pos person, involved in some research projects at Columbia Univ in NY City--I am 39 w/ a CAG of 42--and have been told w/great confindence {from researchers} that there is a treatment for HD w/in my life time. I entered the research projects for my kids {4yrs old and 6yrs old} so they wouldnt have to deal w/the out come of HD but now am very hopeful that my kids who will obviously know about HD, but will know there is treatment avail and possibly a cure as well-and they will never consider it a death sentence . You need to take time to be pissed off, grieve, be sad ,then be pissed off again --obviously I spent most of my time shortly after my notice in the pissed off stage LOL. But then take back your life -- HD does not define you as a person- and remember you now have a glimpse into your future --you do not have your whole story ---There are still MANY MANY things you can accomplish in your life, you just know you have to live a little more heathlier {mentally and phsically} than the rest of the world to stay on top of things!!!!!!!!!12 months ago
I totally agree DCB.12 months ago
i'm so sorry about the results.
12 months ago
i love this site because we get talk about are feelings know that the people your talking to are going through the same thing. that was a hard part for me when i got tested. people telling you they understand but they don't even come close. when i found out that i was positive i thought i was going to act a lot different than i really did when i found out the answer.
10 months ago
i was called and have to go in to get tested this week sometime, could you tell me what the test is and my symptoms are alot like rhuemitoid and m.s. without the lesions but since the bi polar they think i have this. can you tell me if like my left arm jerks on me is that a symptom also...?
10 months ago
i am so sorry to hear this. i just text you a letter geuss you wrote that a while ago. are you ok?
10 months ago
yeah, i'm ok now, thanks.... did you ever get your test done?
5 months ago
Melinda,
So sorry about your results. This sucks, and there is no sugar coating that. However, you don't have to be a statistic, you can go out there and take charge of your life. I TOTALLY agree with SKMF and others who encourage you to seize the opportunities out there and LIVE. I live in WA too and have had a lot of experience at the UW program (2 family members in WA are pos) and they are AMAZING people who will give you lots of good advice, support and proactive strategies. I would give ANYTHING to see my sister make that appt and get on board, as I think the trials and chances for cures and treatements are critical! YOU are amazing, to be doing all this so quickly and proactively. Don't let all the numbers overwhelm you or take away from all the positives you have going on too (fiance, family that loves you, inner strength...). You are very young and should go in to this with positive thinking and determination to stay on top. I strongly recommend you find "The Secret" (I listened to it on tape and found it cheap at Costco)... I think it really applies here. Grieve, rage and go thru' all the stuff you need to process this, that is healthy and needed... but then let UW staff help you and grab on to every single life line that's floated your way.... including the countless, loving ones on this site. You're in my thoughts.
3 months ago
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Melinda