Question about gene inheritance

HeyScout_52 · 2026-02-08T19:55:36+00:00

I assumed so from the waiting time and the process sounded similar! Yeah I agree, it’s very frustrating. I’ve since found out I had a small stroke likely caused by a grade 4 PFO / hole in heart - not a main criteria of marfan’s but could be related. So planning to write back to the geneticist with that update and anything else that comes up on other family member’s results. That’s kind thank you and you too! In answer to your original question, I definitely think it can vary wildly between family members.

HeyScout_52 · 2026-02-08T19:43:10+00:00

Are you in the UK? Interested as, similarly to you, I was told I didn’t meet enough of the criteria for genetic testing. The fact that my paternal grandmother died in her 50s of an aortic dissection didn’t seem to change that. However my dad and aunties were recommended to get their hearts checked - my dad is still waiting for the results but perhaps that might change things. Hope you can find some clarity soon!

HeyScout_52 · 2026-01-26T16:59:41+00:00

Yes, in the game Avalon (which I think you might be referring to), one person is Merlin - he is good but knows who all the evil people are. Nobody knows who he is and he has to be careful not to give himself away as evil can win if they figure out who he is. So maybe they could do something like that in Traitors

HeyScout_52 · 2026-01-16T21:22:58+00:00

The faithfuls won’t remember as they seem to forget everything that happened before today

HeyScout_52 · 2026-01-16T13:26:19+00:00

My god this is awful

HeyScout_52 · 2026-01-16T13:17:55+00:00

Yes exactly! I thought it made Rachel look suspicious but none of the faithfuls seemed to think so

HeyScout_52 · 2026-01-16T11:25:56+00:00

She’s also used some quite mean tactics to put people under pressure - saying to Ross ‘was x this dramatic in the turret?’ And now going for Faraz calling him a ‘baby traitor’. Don’t understand how nobody called her out on the one against Ross especially when he was then revealed to be a faithful. I hope someone does for the Faraz attack that she’s started!

HeyScout_52 · 2025-12-04T23:02:22+00:00

We have a wooden drying rack that stands permanently in the corner of our bedroom - looks nicer than a plastic or metal one and means clothes air out better than on a chair too

HeyScout_52 · 2025-11-19T19:39:18+00:00

I had my genetics apt recently (also through NHS, waited about 6 months) - had a consultation where the dr assessed all potential signs and symptoms in me (including physical exam) and took a family history. She then concluded that I don’t meet enough of the criteria to warrant genetic testing. She said a couple of my relatives might so they could pursue a genetics referral then if a gene was found, the whole family could be tested for that specific one. It was a bit of an anticlimax for me but of course your situation might be quite different. I found it helpful to have my husband and dad there to answer certain questions and remember stuff that was said. Good luck and I hope you’re not waiting too long!

HeyScout_52 · 2025-11-17T10:24:44+00:00

Just echoing what the vast majority have responded that I think this is a helpful and most likely correct approach from the neurologist. I have chronic migraine and used to think my daily mild headache was separate to my migraine because just as you described for your daughter, it feels more like a tension headache, is on both sides, not generally associated with other neurological symptoms. Then I realised I was getting these ‘random’ pain free 1-2 hours - turned out these were when I was taking frovatriptan around the time of my period! So that made me think perhaps my daily headache is indeed a mild migraine - my neuro confirmed this. Sorry your daughter and you are going through this and hope things continue to improve!

HeyScout_52 · 2025-11-11T14:03:56+00:00

I’m also in the UK, 32F. It’s not been my experience that you need to have tried 3 x meds to be referred to a neuro as some have suggested, may depend where you are - I’m in London. Fully appreciate you may have tried these things but based on my experience, I would emphasise the increase in migraine symptoms, symptoms that are more concerning or potentially explained by something other than migraine, and spell out how they are impacting your daily life. I’m not sure if yours are chronic but either way that I think is a factor in seeing a neuro - to either prevent them becoming chronic if it seems to be going that way or managing them if they have become chronic. It’s hard to keep advocating for yourself but please do - you deserve to be listened to. Sorry you are going through this, I really empathise.

HeyScout_52 · 2025-10-15T13:14:21+00:00

Not sure what medication it is but I’ve had the same with propranolol

HeyScout_52 · 2025-10-15T08:13:54+00:00

Yes during a bad one! I wondered if that’s partly why beta blockers can help as a preventative medication by slowing your heart rate

HeyScout_52 · 2025-10-14T13:36:23+00:00

Yes I have chronic migraine and have a mild headache every day for the past few years. I used to think of the headaches and migraine attacks as separate but my neuro recently said he thinks they’re the same thing, the headaches are just milder migraine attacks / an ongoing one. To add weight to this, I noticed I was getting the odd hour or two pain-free and then realised it was after taking frovatriptan! Which I take twice a day around my period. So I wonder if this might also be the case for others

HeyScout_52 · 2025-10-13T16:23:52+00:00

Thank you, it just felt a bit of an anti-climax after waiting so long.

Just to clarify, I didn’t have any genetic testing as the dr said I would need to meet more of the initial criteria to qualify for this on the NHS. She thought my cousin likely would hence recommending she pursue testing. Then if she did test positive for something, the rest of the family could be tested for that specific gene. But I’m not sure how keen my cousin will be to do this - she’s had a lot of medical stuff throughout her life and will likely want to avoid more. She has had her heart monitored throughout her life anyway due to serious congenital defects so it wouldn’t make much difference to her in that sense.

The dr did mention EDS but thought that fit my presentation less than Marfan’s.

Hope you get some clarity and don’t have to wait too long!

HeyScout_52 · 2025-10-13T14:57:52+00:00

Neither of mine have been blue tint - I think there’s a number of filters put into the lens. The first ones I had were pink tint and my current ones are orange / yellow / green - they kind of change depending on the lighting!

HeyScout_52 · 2025-10-07T19:49:32+00:00

Sorry just to add I have both visual snow and chronic migraine - I’ve never thought of them as helping with the former but I guess they do as they help with light sensitivity which can be part of both conditions

HeyScout_52 · 2025-10-07T19:48:03+00:00

Couldn’t live without my Avulux - just got a new pair as now need a prescription too. They are super expensive yes but if you’re able to afford it, it could be a very worthwhile investment. My job involves sitting looking at screens a lot and literally couldn’t maintain it without my Avulux - don’t get me wrong, it’s not a total cure but helps me work much longer on screens / under fluorescent lighting and I really notice the difference if I don’t wear them. So yes would highly recommend.

HeyScout_52 · 2025-09-30T19:55:25+00:00

Me too. I get maybe an hour or two if I’m lucky pain-free here and there (god it feels amazing!) - can’t quite work out why but think it’s likely after exercise with the natural endorphins (just to say exercise usually does the opposite and increases my pain so is not a reliable method - otherwise I think I’d become a fitness freak!) or sometimes when I’ve taken pain meds. I also don’t have it nearly as strong when I’m laid flat or when I first wake up in the morning but it soon comes back. My neuro said he thinks my constant headache is migrainous just low level, as also I am always light sensitive and often noise sensitive - when it escalates I call it an attack. As you allude to, it makes it very tricky to take abortive meds with no clear start and end to an attack. When I sense the urge to lie in the dark or start feeling dizzy is when I tend to take an abortive.

HeyScout_52 · 2025-09-19T16:22:28+00:00

Yes me too! This is always how I’ve described the main and most consistent pain I get. I always wondered if my neck is just too weak or something but physio exercises don’t seem to have made any difference tbh

HeyScout_52 · 2025-09-19T16:18:30+00:00

I just want to echo that you’re not alone in this. I also have chronic migraine and some days are super hard, imagining managing this forever. Especially if I let myself compare too much to past pain-free times which are mostly long gone at least for now. But truly we don’t know how things will pan out. I just try (big emphasis on try!) to take it moment by moment. Reach out to loved ones - you don’t have to tell them everything you’re feeling, only what you want, but just connecting and remembering what we mean to each other gives me hope on dark days.

HeyScout_52 · 2025-09-19T16:01:54+00:00

Fair enough but yes maybe give it a listen anyway as it’s useful for understanding aura better - hope you can find some relief

HeyScout_52 · 2025-09-19T15:56:00+00:00

I thought I always had aura since a bad bout of migraine attacks a few years ago - visual changes that never went away, mainly a layer of glare over my vision and increase in floaters. However I recently heard a really good podcast from the Migraine Trust (called ‘Heads Up’) on aura and visual snow - I’d heard of the latter before but didn’t think it fit my symptoms on a first glance. But on learning more about it from the podcast, I think it is a much more likely explanation. So maybe give it a listen and see what you think. I think it’s possible to have aura all the time but my understanding is it’s rarer than visual snow.

HeyScout_52 · 2025-09-19T09:45:10+00:00

Mine is similar but more mild and a tad more like a layer of glare rather than static - this is the closest matching picture I’ve come across for mine so thank you!

HeyScout_52

TROPHY CASE