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February 29, 2016 at 10:05 pm #976NorwaymomParticipant
Hi there.. I am an EDS`er with more and more troublesome health issues as years go by.. I will spare you for all of it now, hahaha…but I think I have CCSVI, I am pretty darn sure of it. And I dont know if it is possible to be checked for it in Norway.
Rare illnesses is so difficult to get diagnosed for in Norway. I have POTS and ME too, and no POTS-doctor to follow up. They just say it is not possibilitys to do anything about it. Therefore I am my own researcher, I study all I can about, EDS, ME, POTS, CCSVI, scoliosis, migraine, spine health, spina bifida okkulta, so many rare things, and no help.
But one step at a time, I try to remember my self of…And right now: Can anyone tell me how to be diagnosed with CCSVI, and how to get the treatment, Diamox?
I think I have jugular veins. Both my EDS-boys at 19 and 25 has, I have seen it on them, but they dont seem as dementia affected as I am. So I need something done quite quick! 🙂
Angioplastic on the jugular veins on my neck would be an easy way to start, wouldnt it?
I have a lot of issues in my neck and back. A lot of damages. And think therefor that my vagusnerve is affected. Can anyone? My dearest, dr. Diana (?) give me some advice? Some hope?
My eyes are burning, my nose is running, without me tearing up, having a cold or anything, head is dementia affected, for many years, and pressure on the upper sinuses also is starting.. Migraine, pressure from the top of my back of my head to the lowest point of the neck.. soo painful. I think there is something under press inside there….
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