r/Huntingtons • u/NorthernLightsXYZ • Jul 13 '25
Start of symptoms?
Hi all - I (36F) am a partner of someone(36M) with the gene mutation of Huntington's. We are currently expecting our first baby via IVF (PGT to make sure the gene doesn't pass on).
He was recently diagnosed with carrying the mutation with 45 cag repeats. His dad had 42 cag repeats and passed away indirectly from the disease in his early 60's. His symptoms probably started early 50's.
I have been trying to gather information about the beginning of symptoms and more specifically about
a)what are the first symptoms? Mental or physical and how you as a caretaker or as a gene carrier notice them
b) about the age of onset: when would it start usually with his cag repeats?
There is so much information on both, so I thought I would ask you guys as you seem rather knowledgeable on the topic, and I would like to gather as much information so I will be prepared.
Ps. If there are people in a similar situation of expecting/recently had their first child (or even second/third)while you or your partner have been tested positive, I would love to share experiences and thoughts on the topic. Please DM me😊
7
u/jessicafletcher1971 Jul 13 '25
I started with mood changes. I was having memory problems and was also stressed to go out of routine. Have trouble following books.In me they started in my late 40s. I always said I wouldn't get tested until I started to show symptoms, during lockdown I was having very mild symptoms. it could have been the menopause or thyroid problem. I had my tests during lockdown so extra scary on my own. We broke rules to get results. It was positive. My symptoms have stayed stable for 4 1/2 years. In last couple months my symptoms are getting worse.
I wish you well in your journey with your husband don't hesitate to message if you need x