Vasculitis UK
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CNS..Vasculities Celebral Vascular disease

Hi To; whom it my concern..I've been diagnosed 4 a Selebral Vascular Diseases ..CNS.Vasculities..started one morning 2004 i have 5 kids one girl 4 boys at the time they're were very little and they were at the living room playing Playstation and i was looking 4 my robe towell 2 take a bath but i decided 2 sit 4 little bit and then in seconds i said 2 my kids ok be good boys ima go and take a bath so wen i got up tne chair i felted like if i was poses by a weid thing got inside my body felted heavy and i said 2 my kids i can't see i heard one of my kid said what's you mean you can't see and another approach towards me but i cant only see one side totally black the other side was wrinkle like a monster and then another brother i heard telling him reach to the phone call police then i try 2 reach the door and call 4 help and said help me pls help me pls and then i step back but i was stiff and the super A x housband and wife came up and said what happens and told me 2 sit but i couldn't i felt like iam a statue one of my kids try 2 put my sandals and said i cant lift your leg is hard mom is like glue to the floor and that's it that's all i remember at the hospital a Dr were tapping my sholder calling my last name 3 time mrs muñiz i want it 2 talk but i couldn't my tongue was so hard but telepathy in my mind i was mumbling try 4 him 2 understand what i wanted 2 said like what's happened 2 me he seem like understand and said mrs muniz 3 time you have a stroke but it was my first time at the time i was 38 and i didn't understand 4 me wen inside my ear and left through the other ear i dindt have understanding or knowledge about the sickness and i slept again end up at intesivecare unit.. ICU for 4 months will i was there i have experience that i was flying but i was like a cross my head up it was a bright light powerful and i talk 2 that light and i speak more Spanish but in English i said and what about my kids it was so peaceful no pain i felt it was so nice i saw little flowers green weird green grass then like i felt a weird sorceress a power magnetic pushing me down in seconds i had to started all over again lost memories recovered but not %100% learn 2 talk walk write took long but yeah i was at reabilitation and member of fam told me my eye went back i was no wonder Dr said no mirrors 4 me no were it was a night mare its easier to said but living this weird experience humm i started 2 have panic attacks and anxiety depressed do to the stroke i have 5 stroke 2008 living in a shelter i have a nother stroke make it short 4 months ago i have 2 min stroke and lost little memories i sturter talking i have now to much pain all over ones a moth i get a weird pain is like a volcano in one side of my head like vapor come out there is inespecable my joint hurt more my hands like i i have al tritis if i sit 2 long is bad if i laying down 2 much is bad i walk cus i love walking but wen i get home uff.. you don't have an idea how painful its is my bones cracked hips arm legs every time i move you hear my bone crak but i dont know how iam dealing with this iam losses my hair i have a angiogram orthe test like catheter i have 4 catheter blood passing so the one at the head is a thin wire but to see my head i saw like a tree branch and blood clot big med and small i call it Jupiter Mars pluton ect ect ..that how they foud out i have cns v never told my story up 2 now ..

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Hiya I have cerebral vasculitis to and my heart goes out to you I hope life gets better for you x it might be worth checking out the book The wisdom of near death experiences by Dr Penny Sartori :) I work In a hospice and have witnessed things that have made me realise there is so much more. Penny did an 8 year study on this subject for her phd and its brilliant !!! Lots of love Diane x


Sorry to hear your story. I'm concerned that you are still getting strokes. Is your disease bring properly treated? Normally with an aggressive cerebral vasculitis steroids and other immunosuppressive drugs are taken long-term, often for life, to try to keep it from doing more damage. Sometimes chemotherapy infusions are used too. Are you on any treatments? What medicines do you take?

I have lived with cerebral vasculitis for 21 years. I first fell ill when I was 22.

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