I have the hyperadnergic type of pots associated with MCAS. I went too see DR. Grubb he will tell you in his own words he is not by any means a mast cell expert he is a dysautonomia expert. I would not recommend anyone seeing him unless you have dysautonomia /pots , his recommendations for me after a years wait , he has over a years wait too see him for your first visit . He recommened I increase my antihistamines which I already knew from this wonderful forum and too start baby asa once a day, he also wanted to try me on a low dose of steroid each day. I have not done the baby asa as I feel such a low dose will not help with the inflammation and I do not want my already horrible tinnitus too get any worse, and I am on so many meds now that I felt I had enough. I also did not start on steroids as that was turned down by my mast cell MD. Ok just my thoughts He is a wonderful wonderful man and DR for pots I absolutly thought he was one of the best Dr's I have seen in kindness and compassion and knowledge about POTS, but only about that and he also states even in his video he has just a very few patients with pots and hyperadnergic type of pots ok my two cents. As far as Vanderbilt I think I have been all over when I was so sick I had too keep trying too find out what was wrong with me I would not give up Vanderbilt was a total waste of time for me as far as my dysautonomia and even though I mentioned flushing numerous times they never stated anything about a mast cell problem . UGH

goldielove, thank you for sharing this information. I also have hyperadrenergic POTS, which was diagnosed at Mayo - Rochester.

While there, I inquired about the flushing episodes I was having and was flushing at the time of my neurology consult and was told by the neurologist that it appeared to be a "mild case of rosacea" (what?!?) and testing for MC issues was never mentioned as an option. Sounds similar to your Vandy experience.

Goldielove,

Who did you go to to get diagnosed for your MCAS?