AIBU - terrified of Huntington’s disease

[HildegardeCrowe]

Background - I have severe health anxiety which makes it hard for me to function and can make me feel suicidal at times. My elderly mother has a hospital appointment next week with the neurologist to follow up on some some symptoms of delerium and involuntary movements of one arm which she had whilst in hospital after a fall a few weeks ago. She had some brain scans when she was there but we weren’t really given the full picture. She’s absolutely fine now and has been since discharge. Because of these symptoms I’m absolutely terrified she might have Huntington’s disease or some other genetic condition. There’s no cure for Huntington’s and if she had it, I honestly don’t know how I’d cope. I’d rather not know. I have a 20 year old DD and the thought of her being at risk is unbearable.

Mum is 89 and I wonder if there’s much point in her being followed up as she seems fine. I wish she wouldn’t go but I know that’s selfish. Alternatively I could just ask her not to tell me what the consultant tells her at the appointment. I have two brothers who she can share things with. AIBU to ask her to keep things to herself? My health anxiety is so bad that I know I’d completely fold if the news was bad.

Huntingdons dxd between 40 and 50, usually?

Op there's a mad genetic horrible thing in my family. Has a certain name but I can't tell you it because I don't know it. Have blanked it out. Grab each day. Now is all we have. Could be hit by a bus tomorrow. Brave face 😳

What did her parents die of and how old were they? I would agree that it almost certainly is not Huntingdon's at her age.

*Huntington's

The age of onset for Huntington disease can vary, but diagnosis at your mother's age is extremely unlikely. The movements caused by the disease is also not limited to a single part of the body. Don't worry about HD unless you have to

A quick google says the latest recorded onset of huntingdon’s symptoms was 65yo. You’re safe OP, and your mum should be able to confirm that soon, so let her.

I think at her age it's very unlikely to be huntingdon's.
unfortunately (and I mean this in the nicest and gentlest possible way op) our bodies just aren't made to go on for ever, and eventually everything just starts to deteriorate.

I think I have health anxiety too ever since my child was diagnosed with type 1. I’m constantly worried they will get another autoimmune issue and constantly worried my other child will develop type 1 too. I’m always watching them and so worried. It’s so stressful I really feel for you.

This is not Huntingdon's. It presents earlier, with an unequivocal, unbroken family history.
Delirium is not uncommon in elderly hospitalised people.
Try to get some help for your anxiety, you can break this cycle.

Thank you all for your kindness in responding to me x

Try not to feel ashamed. You're not choosing this. It's anxiety.

Ah anxiety. It loves to fuck us. An I'm old hat at anxiety. For tonight it must fuck away. Lie down and focus on something like door numbers on corrie street and who lives there and who did in the past. Or something like that. Anything.

Just to say I completely understand health anxiety and I'm so glad people on here have been able to reassure you. Health anxiety is horrendous going through a worry at the moment with hereditary illness and I'm not doing great.

Sending hugs, OP. Health anxiety is horrendous. Try all the drugs until yo find one that makes a difference. A good GP and good psychologist are worth their weight in gold.

Thank you, it makes it easier to think I can’t help feeling like this. @Nikki360 I hope you get through your worry too. I think my GP must be fed up with me because I contact them so much but they’re very patient.

@HildegardeCrowe Thankyou so much

I just came across this thread and find it incredibly alarming the false information that is being passed off as fact. Yes it is less common for people to have a diagnosis later in life but definitely not unheard of. Late onset HD (over 60) makes up between 4.4-11.5% of cases There is also Juvenile HD which make up to 5-10% of cases. I think we nerd to be careful when we put information across, just because people haven't encountered a late onset case doesn't mean it isn't possible and won't be useful to the OP to be provided with false information when she is looking for reassurance and facts.

My understanding of HD is it’s a dominant gene. So there’s likely to have been a history of it in her family, amongst parents, aunts, uncles and your siblings. If no one has had it in your family it’s unlikely to be HD.

Some people can have a lower CAG repeat which would typically be the case in an older onset. Due to the 50% risk it could be possible that the elderly mother dose have it and none of her siblings or children have inherited the faulty copy of the gene. It is certainly not impossible as some of the previous comments claim.

It's quite common for people to present to clinic, recieve a diagnosis and it appears there is no family history there is several reasons for this such as previous generations typically did not live as long as we do now meaning people passing away before symptom onset, the lower CAG repeat as I previously mentioned also there is the genetic grey area where people may not develop symptoms unless they live long enough, intermediate CAG repeats where the individual won't develop symptoms but there is a risk for future generations, then there is also cases where parents turn out not to be the biological parents etc

HD is still a rare and complex condition and I just wanted to add some actual medical facts to the discussion as I feel it is wrong to give someone absolute guarantees when it's not accurate information

With respect OP it's very unreasonable to imagine your mum would start having Huntingdon symptoms at 89! My best friend has it and started showing symptoms in her 30s (as most other people do) - anyway my friend obviously knew it was in her family long before. If there was Huntingdons in your family you'd know about it.

One of my most recent patients is a 78 year old with no known family history, molecular testing shows she does have HD, she presented to Neurology with subtle symptoms and the bloods to test for HD were merely to rule it out however it was positive. On the other end my youngest patient at the moment is 15. So as much as 30-50 is the typical age of onset it is not a guarantee this is how old people will be. Yes it is less common for a late onset but as per the figures I provided can account for up to 11.5% of cases.

Huntington's disease would be very unlikely to suddenly show up at 89. And although involuntary movements can be a symptom, they wouldn't usually be on just one side; and she wouldn't be fine soon afterwards. Huntington's disease is one of the LEAST likely explanation here.