@korixp: Replying to @💌 I am one of the healthiest people. I rarely drink, I don’t eat gluten, I workout daily (used to)… none of it makes sense #chronicillness #autoimmunedisease #csf #arterydissection #veds
I just found vEds in my 23and me data and now I'm waiting on sequencing to know for sure but damn am I afraid
2025-06-02 17:45:26
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tinacook64 :
You will be ok❤️🙏❤️🙏
2025-08-01 17:21:21
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MaryElizabethxScott :
Hi friend, I have been in your shoes and was also told that I could have VEDS. I was TERRIFIED and literally sick until my genetic testing came back. The waiting is scary, but you got this ♥️
2025-06-02 21:38:02
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kaykaymoore :
I’m so sorry. Praying for you Angel. Curious -Are you one of the people who had an adverse reaction from sculptra? Curious if that could’ve played into the bad headache you had. Forgive me if I’m wrong.
2025-06-02 19:11:08
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jennylyne :
The ER’s favorite diagnosis, anxiety or depression. I’m glad you advocated for yourself and I’m praying for you.
2025-06-03 13:12:58
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Fabi Ghersi :
What symptoms where u having to end up in the er?
2025-06-09 20:35:00
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Expert Empty Nester :
You will be ok. I️promise. My Uncle had a CSF leak and he’s fine now. I️have been advocating for people looking at this. They thought he had dementia. If you need a 2nd opinion see Dr. Schievink at Cedars in Los Angeles. He is the #1 specialist.
2025-06-02 16:44:13
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lokosdanveros :
ItS jUsT AnXieTy 🫠 I hate when they say that
2025-06-02 23:45:49
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Discodeb66 :
This is a legit question. Did you have that covid jab? Because if so this could be a huge predictor
2025-06-04 18:32:51
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Centralperk :
Repeat Covid infections are causing CSF, CCI, Long Covid, and more
2025-06-02 21:18:11
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gypsykristy :
I have EDS and ended up getting a brain leak and now having multiple blood clots. Right now I’m dealing one from the top of my shoulder down to my elbow and multiple veins. The doctors are saying that it has to do with EDS but they they’re sending them they have multiple genetic testing because it might be other genetic disorders as well.
2025-07-30 21:20:00
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Glenn Brian :
I feel like doctors are a little quick to jump to the oh you have anxiety, go away pay me
2025-06-03 00:34:27
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itsjainiz :
One foot in front of the other. Day by day. Stay present, very hard I know. Try not to hear the words before they’ve been spoken.
2025-06-02 15:09:35
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Erin :
My friend had a CSF leak and had it patched. She’s okay now!
2025-06-02 19:18:27
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Katie :
I had bilateral carotid artery dissection in my neck when I was 28. I feel for you the fact our bodies can just turn on you is a very strange feeling. Sending you so much love and strength. 32 now and all is well!
2025-07-27 15:15:56
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Kait 🫶🏻 :
Can I ask what your symptoms were?
2025-06-03 01:33:03
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sweetpea91215 :
Did you recently or in the past 4 years have any vaccines? I mean no disrespect
2025-06-04 23:40:38
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Jameela Jamil :
I hope you let the people who dismissed you with stress, what they missed. I’m so sorry. Thank god you advocated for yourself.
2025-07-28 14:42:13
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Harry :
I understand. I’m a doctor. This is a very emotional Tiktok. I wish you the best care.
2025-06-04 00:14:33
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Abroosham :
Hey, I’m so sorry you’re experiencing this. I can’t even begin to imagine how terrified you feel. I do research for a doctor at Mount Sinai that’s a genetic cardiologist in nyc and EDS is one of her specialties. People w/ vascular EDS, or suspicion of it, get priority for appts. She is truly an amazing doctor (brilliant, patient, informative and comforting). Just in case you need a good doctor who you know is in your corner, DM me if you want her name and her office’s contact info. I am not a religious person so I don’t pray but I am sending you the best vibes and hoping you get all the answers and treatments you need.
2025-06-02 14:19:00
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Denise Olmstead :
For a CFS story and you could contact them for the doctor they used in Germany because theu dpevialize in only doung CFS surgeries, go to Sara and Luca on YouTube. One of their recent videos talks about this. Luca had 3 strokes, eventually they figured out there was a leak. Hope you find good doctors to help you hun.
2025-07-27 05:16:50
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ibrake4ants :
How many times have you had covid?
2025-06-02 14:52:47
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bridgetcheocheo :
Glad you advocated for yourself and pushed for an MRI and got a diagnosis. Proud of you, stranger 🫂
2025-06-02 16:19:44
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