Under another topic Joan said, "I think I heard that someone who worked with doctor Afrin is seeing mast cell patients where he used to practice (MUSC?). Do you know if that's true?"

I'm very interested in whether or not this is true.  I'm in the Columbia, SC area and MUSC is less than 2 hours away.  I'll be seeing my GP again soon and I'd love to be able to have a specific doctor's name to request.  Any info on this would be very much appreciated.

Thanks!  

I've got all my test results gathered to discuss with my GP.  I expect a name of a specific doctor from MUSC would be received well...thought of as a reasonable next step.  

If no one surfaces at MUSC, Duke would be my next choice.  But all of this will depend on my doctor's suggestions.

Can't thank you enough for your help Joan!

Thank you for doing my "leg work", Joan.  I'll be seeing my GP this week and will mention Dr. Streck.  

I thought of Duke because of an old post that referred to Dr. Patricia Lugar.  She is also an Allergy & Immunology Specialist.

Just to clarify, my GP (or any doctor, for that matter) has NOT tested for anything related to MCAD.  There has been testing for the typical causes related to my symptoms and a lot of ruling things out.  None of my docs so far want to test for it either because it's "not likely" or because even if they test, they wouldn't know what to do with the results.  But in my mind, I'm still that much closer to getting an answer.  

Can't thank you enough for your support!

I saw my GP today.  He's getting the ball rolling for me with Dr. Streck at MUSC.  I have no idea how long it will take before getting an appointment, but I'll definitely post how it goes with her.

Having access to this forum and such helpful members is quite an asset.  My GP was telling me to "get the phonebook and just start calling doctors" to find someone who treats MC patients.  (He admitted to showing his age with that phonebook comment. LOL) So it was really nice to have a doctor's name ready to offer.  He was impressed with "my" research....it was really OUR research.  Can't thank you all enough!  

Another snag...Dr. Streck doesn't accept my insurance.  I'm going to call insurance company today to see if there's anyone in our network that treats MCAD patients.  The lady in referral dept at my GP is going to do some checking, too.  

One step forward, two steps back!

So today I saw an allergist/immunologist that made a great first impression.  His name is Dr. Hector Rodriguez.  He came across as very knowledgeable, yet humble.  When some of the symptoms didn't fall neatly into the typical guidelines, he said, "That's why we're told the patients haven't read the textbooks".  He's a young doctor, but has worked with doctors at Vanderbilt University that treated MCD patients.  He spent a good hour and a half asking very detailed questions and really listened to my answers.

He's running both a tryptase test and 24 hr methyl-histamine test.  Meanwhile, he's increased my dosage of zyrtec and pepcid, and given me an Rx for Singulair.  He's written out specific instructions for any drug usage, like avoidance of opiates and contrast, including his recommendations for substitutes.  He also gave me a written order for a tryptase test to be done if I have reactions.

My bottom line is this:  If test results come back pointing to MCAD, I have confidence this doctor can and will help/treat me.  If results are normal, I'm confident he's doing a thorough job and MCAD can be ruled out based on his findings.  FINALLY!  I think I'll sleep better tonight.