We’re glad that you found us! You’ll also find that many of our members have had very similar experiences getting a proper diagnosis. And you are right: doctors who are experts at dealing with ES are few and far between. The people here, though, know who they are!
Start the conversation! Click on “+NewTopic” in the upper right quarter of the home screen, and introduce yourself. (Use your profile story, it’s great, and not everyone knows that clicking on your “M” avatar will reveal it.)
All the best, and best of luck!
Seenie from Moderator Support