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.

OP, I'm only a Biology teacher so don't know anywhere near enough to advise. But I thought Huntington's would have been diagnosed way way before age 89. In 20-30s I believe. Plus it's a dominant allele so not one that 'skips' a generation. If you don't have it, your dd certainly won't .

It's really, really, really unlikely that it would be Huntingdon's. It would have started to present years ago. Her current problems are probably age related. Are you getting help for your anxiety?

I have health anxiety so I understand these sorts of worries completely. However; I feel like some quick research would probably solve some of your fears-isn’t it extremely uncommon to go your whole life and suddenly get diagnosed with Huntington’s Disease, it’s usually in 30s-50s so I am sure your mother would have noticed by now!
It sounds like it could be related to old age or perhaps something like dementia.
I know it’s hard but withhealth anxiety, always stop and ask yourself: what evidence do you have?
You literally have zero evidence at all it is genetic or Huntington’s disease; in fact you have plenty of evidence it’s not this!

If shes 89 I would be utterly amazed if its Huntingdons. To make it to 60 without symptoms is almost unheard of

I know it's very scary (my cousin had HD), but as PPs have said, it would have shown up years ago. Generally starts at 40 i think but my cousin showed symptoms in his early 30s. Definitely get help with your anxiety if you can. Good luck

Huntington's presents much earlier and many other age related diseases have these symptoms. I do hope your mother isn't too unwell but I very very much doubt its Huntington's.

Secondly, you need some support for your mental health. Health anxiety is so difficult to deal with as healthy functioning requires an element of being concerned and cautious for your health. Proper support from a counsellor with HA experience would do you wonders.

If she had Huntingdons, it's very likely she would have been diagnosed decades ago. People with HD rarely reach their 80s. It sounds more like something to do with her age, rather than genetics. But I do think you should seek help with your anxiety, as it sounds like you are struggling right now. It may be worth getting a telephone appointment with your GP to begin with to see if they can help you access help.

Yes it would have shown up years ago.
But I don’t understand you saying you wouldn’t want to know - I can understand maybe from your own perspective, but if she DID have it then there would be a 50% chance you would have it and then a 50% chance your daughter would have it (so overall a 25% chance she’d have it). It would be extremely selfish of you to prevent your daughter from knowing about a possible risk to her own health.
You need to get help for your anxiety, I know it’s not easy but that needs to be your priority.

If your mum is 89 not only would her Huntingtons have shown up years ago it would have also shown up in your siblings or you by now. As none of the 3 of her children have symptoms (which has a 50% probability) and she is 89 I think we can be pretty certain it isn't.

Please speak to your GP about your anxiety

I'll be shocked if it's Huntingtons. It's diagnosed way earlier. Your anxiety is really going too far with that one. More likely side effects of a stroke.

Look up Lewy Body Dementia - it isn't inherited
The fall may well be a clue it often goes with Parkinson type feature
(disclaimer my dm had this)
She may have had a small stroke or Vascular Dementia
It won't be Huntington's as pp have said she would have developed this well before she was 50.
Your dm is 89 & her condition is most likely age related (& she is a good age)

Thank you everyone. I’ve been trying to get help myself for ages and was seen a few weeks ago by the mental health crisis team because I was in such a state. Medication doesn’t work for me anymore (have been on everything) and I’m waiting for therapy....I honestly think the only way I can deal with this right now is to ask her not to tell me what happens at the appointment, be it good or bad. Is that really awful of me?

She definitely didn’t have a stroke (conclusive on scans) and no dementia symptoms. I do hear what everyone’s saying about my anxiety though and desperately want to get on top of it.

Huntingtons’ onset is much much much younger than 89. I don’t know how you can justifiably tell your mum to withhold the details of her appt - she’s 89 for goodness sake

I'm not going to give online diagnoses for your mum based on fragmentary info.

but I will say that if she is mostly fit & well at age 89, then you really should not be worrying about inherited conditions.

Think about your mum for a change. what support does she need from you? how can you help her?

I've cared for many Huntingdon's patients over my years as a nurse. Not one was diagnosed after the age of 40. I'd be happy to bet £1,000 your mum does not have HD.

I think if you can’t support her at the appointment, with the news or with future issues/treatment, you’d better find someone who can. Health anxiety can be debilitating, no doubt, but an 89yo needs support.

Find out what sorts of help you are comfortable giving her (cooking meals, taking on her admin/paperwork, etc) and line up someone else for her to talk to and follow her medical admin.

With every respect OP your Mum is 89. She is very elderly and unfortunately none of us are immortal. You are extremely fortunate to have had her with you for so long.
Also you are putting 2 and 2 together and coming up with 5. Why would you think her symptoms had anything to do with HD?
She is 89! Nothing works that well when you are 89! The human body starts to wear out. It isn't that efficient anymore. Abit like a car or a washing machine.

This is very unlikely. Plus we should have a cure (yes a cure) within the decade.

OP. If you have a history of health anxiety, I would steer away from doing any further research on illnesses and instead focus on your mind. It is natural that you might start catastrophising right now and your mind will be seeking to reinforce any anxious thoughts you have so will be biased in selecting which information to pay attention to. Try to step back from your thoughts. Notice them and try to let them go, remembering that a thought is simply a story our mind tells us, it is not the truth. If you have ever had CBT or ACT then try to apply some of the principles and strategies you learnt. If not, now might be a good time to talk to your GP. Good luck to both you and your Mum.

I was reading about HD earlier as I have been re-watching House. Google suggests most HD sufferers by the age of 60 by pneumonia.
As folks have said your mum is 89 - my 85 grandmother isn't very steady and I don't expect her to be. I do understand what you mean about hereditary conditions. My mum who died aged 61 had a long list of them. I refused to listen what they were as I wanted to wake up with a bit of hope in the mornings- and I do :-)

Yes you make some good points @Zippetydoodahzippetyay. I feel ashamed that I’m putting myself before my dear mum and would dearly love to find some proper support but so far haven’t had much luck.

Oh and though they contributed to her death as her body was in poor shape she actually died by choking on a crumpet- sometimes you just don't know what the future holds.

I’m sorry about your mum @ArnoldBee

The barest amount of research would reveal that she won’t be diagnosed with Huntington’s at 89.
Look into counselling, I managed to afford it as a single parent relying partly on benefits, it is possible and worth the investment.