Can anyone recommend a Mast Cell doc at the Mayo Clinic in Minnesota?

Kim,

The major Mayo doctor who knows masto is Dr. Butterfield.  His major area of expertise is the SM patient.  If you don't fulfill the SM requirement, he will openly say you don't have mastocytosis.  I don't believe that he is up on the MCAD diagnosis.  He is one of those of the neoplasm camp.

What I have learned by talking to some of those patients who are up in the masto world and have years of working with or around TMS is that you have two camps of researchers - those of the classic SM form of masto and that of the wider diagnosis of MCAD.  Depending upon which doctor you go to, depending upon his basic philosophy and understanding of masto, he is going to either tell you that you do not have mastocytosis and therefore a mast cell disorder, or he will diagnose you with MCAD.  This seems to still be going on within the masto researchers in spite of the fact that the MCAD diagnosis has been made official.  

Those of the SM camp include Butterfield, Gotlib, Metcalfe and other American doctors and most of the European experts.   Those of the MCAD group are Castells, Schwartz, Escribano, Molderings and Afrin and some others whom I'm not sure of.  Then you have those who straddle both groups like Akin.  

What does this mean to us patients?   Well, those of us who fall outside the WHO criteria for SM end up either not getting a diagnosis from the one group, or we do from the other.  

But if you go to lesser doctors who are unfamiliar with the MCAD diagnosis, they are not going to be up on the MCAD diagnosis and they are going to automatically be part of the SM group since they don't know about this new diagnosis.  It's going to take several years for our doctors to come up to date on the MCAD diagnosis.  This is why your doctors may not be able to recognize your disease.  

Kim, you are obviously not a classic SM case.  If you were, then your doctors would have found it by now.  This is why you keep running about in circles.  Which is why you need an expert who knows and recognizes the MCAD criteria.  Dr. Butterfield is good, he knows what he does, and even though he's on the dry and difficult side, that is his personality it doesn't mean that he's incapable as a doctor.  Too many patients tend to look at doctors through an emotional viewpoint and they think a doctor is "good" if the doctor makes them feel good.  The one has nothing to do with the other.  Butterfield is good, he's an excellent reputation and he knows masto.  However, he's going to stick to his guns and what he knows and that means he's going to stick with the classic mastocytosis diagnosis and if you don't fulfill those requirements, then you won't have a diagnosis and will go home empty handed and disappointed.  

So, again, I recommend that you do not go to either Mayo clinic even though your doctor wants you to.  I would only go there AFTER you've gone to someone like Afrin or Schwartz so that you won't find yourself being batted about.  

Knowing your situation Kim, knowing how much this lack of a diagnosis is impacting upon your personal life, you must have a diagnosis NOW!  

I know that you are torn in two, feeling that you must follow your doctor's advice and go where he sends you to, but we patients, in this aspect, know better than our doctors do.  If you go to the Mayo right now, you will come away disappointed and you don't need this right now.  You need to come away with ANSWERS so that your familly and your doctors finally can have something to explain your illness with.  If you go to the Mayo now, you won't have it for there are NO DOCTORS who know mastocytosis at the Mayo in Florida.  I know this because if there had been any when I asked Dr. Akin and Dr. Castells for a referral they would have told me of someone and they did not.  They gave me only one doctor's name and even that doctor they said that he knew the classic SM form of masto but not the MCAD form.  Those two KNOW who is who in the masto world and they KNOW that in Florida there isn't anyone there!

This is why I say, you need to go to either Schwartz or Afrin and once you can get some kind of answer with them, if you want to head up to Boston, you'll have a means to do so.

My wish is that Boston would not restrict seeing patients with already worked up cases.  I understand their reasons for doing this for they are just way too short handed, but the problem is, if you don't show any MC markers, then you are unable to see them.  They don't require you be fully diagnosed, but they aren't interested in having to do a full workup and this means that some patients are up a creek.

So, again, this leaves Schwartz and Afrin as your choices, Kim and I would very honestly leave Mayo on the back burner instead.

This is just my opinion.  I know that there are other options, however.

Lisa

Im seriously thinking my best bet would be with Afrin. There are many reasons. I cant get to Boston, way too far for me (from Fla) but Afrin is right at the edge of my ability to travel (in Charleston). I adore Dr Castells and Akin and never having met them but.. they are incredibly busy, and I dont have the case qualifications they require . I just have a feeling I cant quite shake that Afrin is the right person at the right time. I recently saw a presentation he gave and I was MORE than impressed (and Im a nurse too!). I was amazed that he even used some phrases that we do when we are feeling so frustrated. It made me feel as if someone finally heard us! The last 3 reports from people here have all been GREAT after seeing him. We NEED more masto experts in the US (and everywhere else), I have great faith and hope he is the next one
I know some of you might not agree with me but please, stay on my side long enough to see, ok?? I do listen to your advice and long you MUCHES lol..
hugs
Ramona

Yes, Joan, I've heard good things about Dr. Weiler too.  I didn't realize she was at the Mayo in MN.  

I believe that Boston wants proof of mast cell activation and even a BMB workup before taking a patient, but I'm not certain.


Lisa

And THAT is the crux of the matter, well-put Summer. When people think they have a mast cell disease, who do you go to for diagnosis?? Someone who knows little about it and then your medical records are REALLY screwed up, OR an expert?? But they are deluged by those of us crying for help and set diagnostic limits we cant meet without an expert..without them!  its the chicken and the egg syndrome, who came first??

Just wanted to share a few thoughts. Lisa, your response to Kim, dated 6/11, is the BEST description I have heard about which patient should see which doc & WHY. I think it's important to keep sharing our experiences about various docs- especially their take on MCAS/D.

I saw Dr. Castells in Boston a few years ago. It was relatively easy to get an appt. I referred myself & a BMB beforehand was NOT necessary.

FWIW, my local allergist/immunologist is previously from Mayo, MN. He's always treated me appropriately & compassionately- even when every allergy test- skin/RAST was negative and I continued to show severe symptoms. He called my anaphylaxis "spells." I found this frustrating & condescending until I learned spells is Mayo-speak for an anaphylactoid reaction. I've even stumbled upon Mayo research about "spells." I have gotten everything I needed locally from my Mayo trained doc- except for a DX. THAT'S why I saw Dr. Castells.

More like Russian Roullette to me Joan!!!

I live in Boston and have been seeing Dr. Akin and DR. Castells.  When a local dermatologist diagnosed me with Mastocytosis via a skin biopsy, I was able to get an appointment without any problem.  I also go to a gastro doctor who is at Brigham's as well and specializes in Mast Cell disease.  In fact, he just co authored an article with Castell's on
MCAD.  He is thorough and great to deal with.  He is on the Brigham's web site.  His name is Matthew Hamilton.   He is young and just building his practice and appointments are available.  If you have Mastocytosis or MCAD and have gastro problems, I recommend him.