Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> Dr. Blair Grubb http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1334622600 Message started by goldielove on 04/16/12 at 13:30:00

Title: Dr. Blair Grubb
Post by goldielove on 04/16/12 at 13:30:00

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

Title: Re: Dr. Blair Grubb
Post by Anaphylaxing on 04/16/12 at 13:54:43

Very interesting. Thank you for sharing

Title: Re: Dr. Blair Grubb
Post by PepperPOTS on 05/31/12 at 14:06:22

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.

Title: Re: Dr. Blair Grubb
Post by kimtg68 on 05/31/12 at 16:57:42

I saw two different Vanderbilt doctors (gatroentetologist and rheumatologist) and neither suggested a mast cell issue or POTS. There are many, many good doctors who just aren't familiar enough with either disorder. But then I saw an allergist at Vanderbilt, Dr Fahrenholz, who has several MCAS/Mastocytosis patients. He spent a couple hours talking with me. He seems knowlegable on both and is sending me to the Autonomic clinic for POTS testing. So although my first two experiences at Vanderbilt were flops I think I finally got a good one on my third try.

Title: Re: Dr. Blair Grubb
Post by Futurehope on 06/04/12 at 12:49:27

Goldielove,

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

Title: Re: Dr. Blair Grubb
Post by goldielove on 07/07/12 at 12:41:03

I went too dr afrin for my original diagnosis but did get a second opinion from dr castells