I joined 6 months ago when suddenly my life changed. I got the whole FND diagnosis and KNEW full heartedly this diagnosis was not what I was going through. It wasn’t until I saw an opto neurologist who sent me for genetic testing. I have Ehlers Danlos, POTS, cranial instability, and this all ties into EDS. This is all new to me, even though I have spent a life time dealing with complications we had no idea as to why they occured.
Never stop advocating for youself. It has been one hell of a journey fighting through this nightmare of not being taken seriously and dismissed by doctors. Best of wishes to all. I will be leaving this group in the near future, and joining support groups tailored towards my diagnosis now.
Xoxo! - be strong