Hey Moxie, I made a reply to this in the other thread.   Again, to the best of my knowledge, there isn't anyone.  

The ONLY one who was even close was Dr. Leonard Bernstein in Cinncinatti, but he has retired and his son is not up to par with masto.   Cleveland Clinic is not good either.   Your closest authority is Dr. Lawrence Schwartz in Richmond Virginia.  Since I know that drive, it's a 5hr drive to DC and then 2 more down to Richmond.  

Lisa

I'm sure it will now.  The MCAS diagnosis is a much more encompasing diagnosis and there are a great deal more people with this form of MC disorder than the very limited SM.  Once doctors begin to disseminate this diagnosis, it will stir more interest and knowledge.  

Doctors don't know about mastocytosis because so very few people are affected by it.  Mastocytosis is an orphan disease that affects perhaps 1 in a half million people!  In the US alone they thing that perhaps there are no more than 20,000 patients.   They say if a doctor sees ONE mastocytosis patient in his entire career he can consider himself fortunate!  Why would any doctor study about a disease that chances are he will never, ever see?  Makes sense, right?!   Yet, what about all of those patients who were bumped out of the mastocytosis diagnosis who don't quite "fit in"?  

It's very possible that MC disorders are much larger in patient group.  But it's going to take TIME for this to be known and talked about.   MC research is becoming a hot item and the more research being done into the MC and it's function and effect upon the health, the more doctors will become aware and interested and this will eventually spread out to the diseases themselves.  

So, be patient Moxie, it will.  

But the real issue here is YOU and your needs for attention...NOW.   So, since you've made the best decision in favor of your health, the issue isn't to find a doctor to diagnose you, but one who will support that doctor who does.  So, do a bit of poking about trying to find one, but don't get too worried about it.  Yes, Dr. Afrin needs someone to support him, but it may be easier to see him FIRST and then, like Kim and the others, seek out to find someone after you've got his professional opinion supporting this theory.   Some doctors may not take too keenly your seeing them based upon a suspicion and will only want you after there is another doctor who is guiding the boat.  

So, this is something to consider.


Lisa