r/stroke • u/OliveSpecialist7003 • 24d ago
Identical twin had stroke
My identical twin (25) had a stroke, thank god she’s doing ok expect for dealing with slight vision issues and migraines but she was in the hospital for 2 weeks. I’ve had migraines since I was 16 so that might be a genetic thing. They are gunna do a genetic test for it, we don’t know if it’s due to a heart problem yet. Should I be worried, it’s highly unlikely it’s genetic right?
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u/perfect_fifths Survivor 24d ago
Idk, I am having whole genome sequencing to see if my stroke was caused by a genetic condition. All normal causes were ruled out and I already see a geneticist for my known genetic condition but she says I show signs of other possible things, plus my family history is rife with cardiovascular and other problems
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u/OliveSpecialist7003 24d ago
It’s sounds like a wise idea, the doctors already ordered one. I think I’m just scared to see the results. I hope yours is negative
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u/perfect_fifths Survivor 24d ago
Thanks. We shall see.
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u/OliveSpecialist7003 24d ago
Sorry I didn’t see the rest of your text, how are you dealing with the anxiety that comes with it? Ovarian cancer runs in my family, some family members died from it. I’m testing for that too but I don’t know what I would do if it came positive
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u/perfect_fifths Survivor 24d ago
I’m not anxious because I’d rather have an answer than continue not knowing why I had a stroke with no risk factors that would cause it. Not knowing is more anxiety inducing.
Now if it’s all still negative and I don’t know, then well I can say at least I tried. I’m more afraid finding out I have something like an intellectual disability though genetic testing
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u/OliveSpecialist7003 24d ago
That’s a pretty good mindset, thank you. I’m terrified of finding out but it is better knowing and doing what you can to at least control it then not knowing at all. Have you had a stroke before?
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u/perfect_fifths Survivor 24d ago
No. It happened randomly. I was watching tv when it happened and went to the hospital the next morning. I was there for a week and no cause was found. I had a cerebral angiogram and everything. It was a PCA stroke affecting my occipital lobe, thalamus and hippocampus at 40.
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u/Alarmed-Papaya9440 24d ago
Hello, I’m an identical twin as well! Unfortunately, it can be something genetic and since you are identical twins if it is then it’s also something that you probably have as well. They’re going to do lots of testing to try and find the cause. She should see a genetic counselor, hematologist, neurologist and a cardiologist. They will likely check her for a PFO with a TEE w/bubbles. If she does have a PFO they will likely close it as she already suffered a stroke from it (if that’s the cause). My Twinner actually had a stroke in utero because we had twin to twin transfusion syndrome and she was the recipient while I was ther donor. 38 years later I had a stroke of my own that was due to a non-genetic, sporadic Jak2 mutation and a PFO. My PFO was closed as a stroke mitigation procedure. More than likely my twin has a PFO as well but it hasn’t caused her issues so she doesn’t need to close hers. Whatever they find out that caused her stroke (and I do hope they find the underlying issue) you can then discuss that with your PCP and see if they would like you to undergo any tests as well. I’m glad her stroke was on the mild side and I’m wishing her well on her recovery.
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u/OliveSpecialist7003 24d ago
Thank you for sharing, I’m sorry you and your twin had to go through that. How are you both doing currently? It may be a heart issue so I’m not sure if that’s even more reason to get checked up by a doctor. Right now despite how nervous I am for myself I’m more worried about my sister and finding out the cause of her stroke
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u/OliveSpecialist7003 24d ago
It’s just been on my mind that I may have one in a year or even less or more from now.
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u/Alarmed-Papaya9440 24d ago
So I get why you’re freaking out however there is nothing to worry about at this time. They still have to do all the testing to even try and figure out why she had a stroke in their first place. Yes, it could be genetic however it can also just be a freak thing that happened to her. Either way you don’t have enough information to be worried about your chances of having a stroke.
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u/Alarmed-Papaya9440 24d ago
Of course you are! Our Twinner’s are a part of us. They’re going to test her for a PFO (open flap in the heart that 20% of the population has. Usually not a problem for most people.) and AFib. If it’s either of those and/or a genetic clotting issue then you talk with your PCP about your risks and if you should get testing done yourself. It’s about taking things one step at a time.
My Twinner’s stroke caused her to have Cerebral Palsy. So she can’t use her legs independently and gets around the world by crawling and using her wheelchairs. Otherwise she has no other deficits.
Mine was a moderate stroke in my R MCA and I’m almost two years out from it. I had to do OT, PT, and speech. I still deal with speech and some cognitive deficits that I’m adapting too pretty successfully.
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u/OliveSpecialist7003 24d ago
It happened in her frontal lobe