Your story sounds scarily similar to my own.

I am currently waiting to see a clinical geneticist regarding ehler danlos syndrome (EDS) as I score 7/9 on the beighton scale.

I have dysautonomia (partial) my main symptoms are postural orthostatic tachycardia, post prandial hypotension, gastroparesis. My oxygen levels drop on exertion and I find it difficult to maintain my body temperature. I have just started treatment on florinef to see if this can boost my blood volume and increase my low blood pressure.

EDS and POTS tend to run hand in hand, its estimated 60-80% of POTS sufferers have EDS. A good web site with a forum is
http://www.ehlers-danlos.org/forum/i...75c75fca1afa58

However neither my dysautonomia nor the EDS explain my double vision or pretty much constant ptosis bilateral and unilateral. Which is resolved with mestinon. Unfortunately the side effects from mestinon are now too great for me to continue with it. I continue to believe I have ocular MG.

I was I believe unofficially diagnosed with somatization / conversion disorder. I can only guess this is the case due to the way my gp started treating me and when I had to go to the ER I was completely ignored.

I have now changed gp practices and my new consultant and his team - despite the fact they are geriatric specialists - I'm 37- have been brilliant putting me forward for testing etc and actually listening to me.

I congratulate you on getting a diagnosis as I can appreciate how hard it is. By changing drs, eight days after my first visit I had a chronic skin condition diagnosed and treatment started after 13 years suffering with it at my old practice.

When your sick its hard to fight, sometimes you need a break just to regroup and get some strength back.

Well done!