Another new member with rubbish Genes!

[diamondcut]

Hello everyone

Just a quick intro before i begin to post questions else where.
I am 28, had EDS 3 Dx aswell as POTs a year and a half ago. Last five years have been extremely tough to say the least, and the last year or so despite my gratefulness to the decent Dr's Like Prof Aziz and Mathias atleast i finally have an answer as to why i felt i was literally dying each day that went by!!!

Any way lets try stay happy happy on here, i go on DI-NET which is an excellent dysautonomia website (mostly American) but a fantastic place mostly for POtsies but also a lot of Hypermolisers, MCAD-eeerrrsss! and pretty much everything inbetween.

My main problem with my EDS is it does not so much effect my joints at present, but its more nueropathic pain such as Vuladynia, daily chronic migraine and GI tract nausea and pain. I guess my EDS gets my bloods vesells and veins (hence why i have POTS and migraine) I have been on a lot of medication over the years and really not much has helped. Clonazapam is the only thing that has helped my high heart rate and migraine oh and botox for the pain too.

I feel i could have an autoimmune issue underlining a lot of this too so hope to get to speak to a lot more of you on here.

Diamond

[madmum]

Hello and welcome to the boards,hope we can get to know you and you can find useful advice.

[sheppeyescapee]

Welcome to the forum, seems like you have a lot of medical input going on. We're the same age and I'm currently awaiting my follow up appt at NHNN. Hope you find the forum as useful as I have

[spinner]

Welcome, I'm only new too but have already found some wonderful advice and people.

[diamondcut]

Thanks every one for your warm welcome.
As much as you can learn so much from being on the American boards becuase you can learn so much from there research hospitals, once you approach dr's here with the infromation gleamed its yet another battle to get what you need. I forgot to say i see a Dr //// at the National Nuerology Hospital in London. He is a "head ache" expert. So if any one needs advice or to swap ideas on Migrain related info please ask.

mod edit - Dr's name removed, please read the site rules

[JessicaNJpa]

Welcome! let us know how the autoimmune question goes.