Stroke at 16 years old

Hey everyone. I’m a 16 year old female, I have had Systemic Lupus for 7 years now, usually just causing joint and muscle pain and the occasional GI problem. This year my Lupus took a turn for the aggressive, the inflammation caused my left internal carotid artery to totally occlude, and caused some blood clots in my jugular and sigmoid sinus veins, giving me a stroke. I was in the hospital for 3 weeks, discharged last Friday (yay!)
What stings is that the doctors overlooked my symptoms for months because they thought I was far too young to be having / had a stroke and just brushed it off as “uncontrolled lupus”
so much of this pain could have been prevented had I been taken a little seriously

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Oh my word, so sorry to hear what happened Rosa, are you doing better? Any side effects from the stroke? You seem very knowledgeable about your condition for someone so young.

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Hey there, thank you for the support. I’m slowly starting to feel better on the new meds I was prescribed; I was left with some left side-weakness but it’s really not too bad considering what could have been. I find that I like to research everything the doctors tell me so I can get a better understanding, it’s reassuring to know these things

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Rosa, I am a med aid and have worked in the medical field for 15 years. I also have a sister that has the cousin to lupus. It is unfortunate that the doctors missed your symptoms but don’t be too hard on the hon…it is so rare for that to happen to a 16 yr old that they didn’t consider it a possibility. However, i agree too that they should have listened to you more. Now days doctors need to take the time to listen more carefully to their patients no matter how old or young. That is why I love living in Kansas in the rural area I live in…the doctors will sit with you and hear you out and order tests related to what you talk to them about to either rule something in or out. I used to live in a big city…San Francisco to be exact and the doctors didn’t think I knew what I was talking about when I described what was going on with me. I am glad you are doing well but at the same time be careful what you look up on the internet. I once had a doctor tell me that too much research could actually set a person back health wise. I am 62 yrs old and am a computer geek…used to rebuild and repair computers in spare time. I never understood why he would say that until I realized that I had gone I to a depressed state and couldn’t seem to climb out of it. I then realized if ally it was because of all the I do I was reading about my health…it was pretty depressing. Not all of what you read about a health problem pertains to you. Some research you get a bit too much info and then apply all of it to yourself. I hope I’m making g myself clear. Research is good…just be careful. So glad you are doing better hon

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That is a good idea keep researching everything I do the same thing I’ve been sick 20 years I’m 42 now my prayers are with you sweetie💪🙏💗

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Have you been tested for APS (Hugh’s syndrome)? It often runs with lupus but it’s rarely diagnosed. Causes blood clots stroke heart damage and more. I unfortunately learned I had it in March 2017 after suffering a stroke two heart attacks complete organ failure grand mal seizure and a 9+day coma.

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I’m sorry to hear this, last Sunday I had a muscle spasms in my left arm n everything is fine but my left wrist down to my finger tips keep going to sleep in going numb n getting cold n hurts real bad, my wrist goes limp… They can’t figure out if it was my fibro, or lupus, flared up or if it was a slight stroke…

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It’s a good idea to keep a diary on your body when you have lupus cuz I had a stroke also at the age of 36 I’m 43 now they told me all the one day I had lupus did degenerating rheumatory arthritis COPD and some other stuff from in one day so sweetie you are doing very well for your age praying for you

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Im 30 and just this yr ive had 2 strokes and within the last week and a half a heartatack i also have muscular dystrophy, and arterial flutter, with heart failure now…
Should i ask to be tested for that?

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I always tell my doctors that I k ow my body better than anyone else so someone needs to listen and hear me correctly. I say this to all new doctors due to many years ago a.doctor not listening to me during my second pregnancy…I k new something was wrong and that I should have a cecarean birth early but he didn’t listen. My baby was born still born passing only 5 he’s before I delivered

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Hi Rosa My name Hector they call me Gordo maybe I can send you some information if that’s ok

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That’s-right I body knows but what going on Dr don’t know everything.

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Hi Rosa, I hope you’ve continued to improve in the time since you wrote. I started complaining of stroke signs to my doctors who told me I was too young (one even said I was just “hysterical”). I was 30. 30 is not too young for a stroke. But they didn’t listen. It took me awhile to be heard. When I was finally imaged and cared for, I thankfully wasn’t having strokes. I have a rare form of Migraine that mimics stroke. All this rambling to say: YOU know your body best. Keep fighting for the care you need. ✌️

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