Re: No Idea

[Guest guest]

Dear ,

I'm sorry your doctors are at a loss. What specialty are these doctors?

<<they said as well that EN is not a diagnosis it is a symptom. >>

This sentiment really annoys me. Yes, EN is often a symptom of

underlying disease like Sarc. or Crohn's or Valley Fever, but about

half the time there is no concurrent disorder going on that can be

discovered even after extensive testing. They call it idiopathic. I am

idiopathic and have been for 37 yrs. Many in this group are

idiopathic. This is the sort of attitude that keeps us from getting

research done. We idiopaths suffer from EN as much as anyone else with

a concurrent diagnosis, and to boot we have no idea why.

I would say that it is now time to find a different doctor. And your

current doctors may just be hoping you leave and take your difficult

to diagnose case with you.

Find a teaching hospital if you can. You want to be seen by doctors

who have seen many hard to diagnose cases. You want to find doctors

who view yours as a challenging case, not an annoyance.

You have Chronic Sinusitis, right? To me that is a clue. You have a

possible sinus infection. Has that been cleared up? We had a member

whose EN cleared when she had infected teeth extracted. In her case

the infection caused the EN. It could be similar with your case.

You also have Endometriosis. It has been guessed that with

endometriosis " The immune system does not work properly and allows

endometrial cells to attach to and grow in abnormal locations. " So

here is another possible clue. It seems to me you have plenty of

things for a good doctor to explore. Now don't be down, you just find

a better doctor and take it from there.

I know it's frustrating, but you aren't alone. We all have felt your

frustration.

Love,