Hi All! I am new to this group and trying to adjust to a life with Huntingtons disease. Towards the beginning of the year was when my family first learned about HD. My uncle was diagnosed with 42 repeats. My dad then went through the testing and tested positive with 41 repeats. I just received my results yesterday and wanted some input. My doctor said that in 27 years of HD testing, this is the first time he has had a childs repeats decrease. I have 39 repeats. They are now testing my DNA against my dads. During my 2 month testing process, my doctor skipped over what the "grey area" means because he thought I would have at least 41 repeats like my father. Yesterday when he gave me results he went over what having 39 repeats mean, that I may or may not develop symptoms. I have been experiencing issues with my memory, focus and speech for a while now (even before we knew my uncle has HD). I was sure that these issues would be attributed to HD. So when I found out I only have 39 repeats, my Dr said my issues would not be because of HD because at age 34, I am too young to develop symptoms. Even though having 39 repeats is better than 40, I feel like I am still stuck in limbo. At least with a 40 or above I could expect to get symptoms at some point. My two questions are first, has anyone ever experienced or know of repeats decreasing when passed by father to child? And second, what have your experiences been with someone in the grey area with 36-39 repeats? This has been a very crazy 6 months for my family. I feel so horrible for everyone in the family. My mom is so upset with our results. I also have a younger brother who has decided he doesn't want to test right now. I do not have any children yet and have been trying to conceive so for me, I knew I was going to get tested. It's hard having to deal with this with no support other than my family and HD team. I feel like it is hard for my friends to understand what a horrible disease this is, so it makes it hard to find anyone living with HD in their lives.

Welcome to the club to which no one wants to belong. I too have a CAG score of 39. I was tested about 7 years ago when we found out my Mother tested positive for it. She also had 39, so I cannot address the decrease question. However, I do remember reading that it is possible to pass on fewer repeats but it is not as likely as passing on the same or slightly higher. I am 60 years old and feel that I am just starting to get some early symptoms. If I didn't know about HD I would just attribute my forgetfulness, clumsiness, sleep issues, mood issues etc to age. I may be 60 but act and feel 40. Actually my mood issues started several years ago as well a my memory problems. I use to have a phenomenal memory but now it is difficult. You learn how to cope and hide it with technology and the good old post-it notes! I still work full time in a professional position and no one knows of my disease. There is a lot to read on the web. Having 39 repeats puts us at 80% chance of developing symptoms. I have read that with a CAG score of 39 the average for symptoms start between 40-55. But that means some get it sooner and some get it latter so not much help there. The knowing and yet not knowing if or when is a real roller coaster. If you are not yet on antidepressants do not feel bad about asking for a prescription. I have been on them since shortly after my diagnoses and they have helped with the mood swings immensely. My doctor told me I needed them! I knew I did but didn't want to admit it to myself. I have two young adult children and still have been unable to bring myself to tell them but it has now become a necessity as one was recently married. I know I have not given you any answers that you are searching for but know you are among friends here. For us at 39 there really aren't too many answers. Every night you go to bet and pray you do not wake up tomorrow with uncontrolled shaking. All the best.
RichK

Thank you so much for sharing your story with me. You perfectly describes my feelings about my results, we are in limbo. I really appreciate the information you shared.

Dr. Jeff Carroll just penned this article about CAG repeats. It's a pretty interesting read, and for sure, there are people with CAG 39 who never show signs of HD. I never heard of the 80% likelihood of symptoms that Rich cited which is informative. Good or bad, we come here to be informed.

I like the articles that Dr. Carroll writes as they are readable in laymen terms.

[en.hdbuzz.net]

Hello!

Sorry to hear about your recent discovery of your gray area status. It's a lot to take in.

My husband is 33 years old, and has a CAG of 38. His father has a CAG of 38 too (almost 70 and symptom free), and his uncle has a CAG of 43 and in full time care. We can assume, his uncle was the first case of the grey area gene expanding into full penetrance range of 40>. If it weren't for my husbands uncle, we'd never know that HD was in the family.

We conceived naturally last year, and had the fetus tested through CVS at 12 weeks. Sadly the results came back with a CAG in the full penetrance range of 40>, and so the pregnancy was interrupted. So I only know of CAGs expanding when passed on by fathers.

We are now expecting a HD-free baby due in January next year, thanks to IVF with PGD. Interestingly a few of the embryos that tested positive for HD, had also expanded into the 40> range. So we found it to be quite a common occurrence for my husbands HD copy to be quite unstable and to expand?we were originally told that what happened to our baby last year was very rare.

Let me know if you have any other questions. There is still not a great deal known about the grey area.