I was lucky enough enough to see the top UK specialist in EDS, he also gave me the fab news that I have dysautonomia!

What type do you have/what does it affect - is it Pots/OI or something else?? Apparently if you get it with EDS, the DA will not get better, so we have something to look forward to lol

I have DA, affecting my HR,BP, gut motility, RLS, Pots and not sure as yet if it is the cause of my lowered kidney function. I hate this thing! And now TOS (must have been bad in a past life)

Mine is just getting worse and worse and I am seeing another specialist and I want meds for it now, because as soon as I wake up, bam, I am hit by all the symptoms and I cannot take it much longer.