Damn, considering that this is an actual topic on here proves the seriousness of both our conditions/complaints and despair of getting rid of it. Have been in contact with them: whenever you feel like it, please give them a call; they’ve at least got me through the night at one time.
@AardappelEdje - I’m sorry your symptoms have been bad enough that you needed to use this resource. Are you making any progress toward a diagnosis or getting surgery?
Prof Marres is the only doctor on our Doctors List for your country. That doesn’t mean there aren’t others familiar with ES, but he’s the only one we’re aware of.
Thank you for your quick response! I have an appointment with local ENT (Groningen, Netherlands) on 22nd of June: it’s a long wait, but it’s some kind of perspective.
Care in Dutchland seems mostly conservative though: instead of actually taking out a cause of diseases, it is mostly chosen to treat symptoms.
The latter would be welcome as well, as nothing is being done right now. The chance of acknowledging signs/symptoms appears slim, that kinda worries me most at the moment.
It seems to be getting harder to find treatment in so many countries I’m afraid…we have had a couple of members from the Netherlands who have had surgery though…