Dr. AKIN at Brigham & Women's in Boston would be just as good as Dr. Castells.  Personally, I wouldn't fly to another country to see Dr. Afrin... I wouldn't even fly to another state.

Heather

Thanks Julie, looks like a great article. I am still going through it.

Here is any early paragraph :

Mast cell activation disease in general has long been thought to be rare. However, although SM and MCL as defined by the WHO criteria are truly rare, recent findings suggest MCAS is a fairly common disorder. Evidence has been presented for a causal involvement of pathologically active mast cells not only in the pathogenesis of SM and MCAS but also in the etiology of idiopathic anaphylaxis [16-18], interstitial cystitis [19], some subsets of fibromyalgia [20,21] and some subsets of irritable bowel syndrome

Here is the link to the full article :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/?tool=pubmed

That's great, I was about to do the same, as some people might not look in this folder as it isn't relevant for a lot of us. Also brings to attention some other doctors in Europe working in this area. Good to have the pdf posted too. Thanks again,

Ruth

Sarah and Julie,


I didn't see your reply Julie to Sarah regarding my comment as to Dr. Afrin.   I want to clarify something here.   As to Dr. Afrin, he's really not a well known masto specialist.  I can't say anything negative against him and after reading the article that he and Dr. Molderings put out, I must agree it's a great article, one I've sent to my doctors already!!

What I want to clarify is this.  Dr. Afrin is not considered one of the major authorities on mastocytosis, neither is Dr. Molderings.  Both of these doctors are of the up and coming generation of newer researchers.  I've had a chance to speak with Dr. Molderings a couple of times, but not so with Dr. Afrin, but the fact that the two of them and a few more colleagues worked together on this article says a lot as to who they are.   I believe that both of these men attended the WHO conference on MCAD last year in September 2010, however, I do not believe that either one of them was in on the consensus meeting itself in the drawing up of the official WHO parameters for the MCAD diagnostic proposal.  If they were, it makes no sense that they would set up their own diagnostic proposal otherwise.  Usually, those who are part of that WHO consensus have their names on the official article which is the fruit of their meetings.  So this would only seem to indicate to me that these lesser level doctors, wanting to get their names more well known amongst colleagues and patients would try to put out a report which is along the same lines as the official one to be published shortly.    

Now, I do know that Dr. Molderings is a very strong proponent for the MCAD diagnosis.  He has published several articles and commentaries in favor of MCAD for the past several years, however, I had not really heard of Dr. Afrin's name really before this.  This seems to me that he's an up and coming name in masto research and that this was a golden opportunity for these doctors to get their names associated with this at a good time before the official document comes out.   Remember, this is how doctors who are wanting to be known as specialists and authorities in a specific disease become known - through their research and the publishing of articles of expertise.  So this is not unusual nor considered negative behavior.  But again, this article is not the official WHO Consensus article that is coming out with the names of Castells, Escribano, Akin, Schwartz, Valent, Sperr, Metcalfe, etc on it.  If Molderings, Brettner, Homann and Afrin end up on the official publication I will be very surprised indeed.


Now as to going to see Afrin, ladies, again, I'd say this... If you had the choice to see the high authority and a lesser authority, which of the two would you choose?   If you are going to travel a distance, spend money for doctors, travel and hotel, etc. who are you going to spend it on?   My money is going to go for the very best and if you have a choice between Castells/Akin versus Afrin, who do you honestly think is going to win?!!!    Boston over Charlston, SC any day, my friends!!

It's not a hard choice I think!


So, again, it's not because I think that there's a reason for NOT seeing Afrin, but that there's so much more in seeing Dr. Castells!!!


Lisa

Julie,

The WHO consensus article hasn't been published yet!  We have no way to compare the notes of this article versus that one yet!!   I have a feeling that they're close, but I'm sure that the WHO criteria is going to be a bit pickier since it's the  "OFFICIAL"  document!   It should be coming out any time now and it will probably spread like wildfire when it does.   We'll all likely be examing it with fine toothed combs and I'm sure that this will be a hot topic for some time to come yet!!

So, as to Dr. Afrin, I agree with you, he probably is the very best choice for anyone who can't get to Richmond Virginia!!    Remember, you've got Dr. Castell's teacher in Richmond, Dr. Lawrence Schwartz!!     He's one of the WHO consensus authorities and so as much as Dr. Castells is praised by the TMS patients, Dr. Schwartz is often overlooked only because he's not as involved in the TMS conferences!  Yet, he's the doctor who discovered the tryptase exam and he's also been a major proponent along with Castells as to the MCAD diagnosis.  

You know, many of us dont' know this but it's been Castells and Schwartz who are really the heroes for those of us with the MCAD diagnosis!!   Those who are of the "neoplasm/clonal" camp were totally against is with Metcalfe being one of the major heavyweights against it!!  Yet Castells is who shouted loudest with Schwartz right there with her and Escribano was behind them along with Akin and then you have some of these lighterweights like Molderings and Afrin who have also been pushing the MCAD diagnosis.  

We MCAD patients really owe a lot to these researchers for if they weren't convinced of our illnesses even though they've not had much to prove their convictions upon, they have gone to the mattresses with the heavyweights who were adamant that the only "true" mast cell disorder was that of SM!!   Their open minded convictions have benefitted a large number of us patients!!!    

Lisa

Hey Julie, you've got me out there wondering if I've missed something lately....what article is this that you're talking about as to Dr. Akin and an MCAD/S criteria?   Is that the diagnostic proposal that came out before the conference last year?   If that's the one then yes, there are some major differences!  This article of Molderings and Afrin's is very specific and details the exams and the results and various criteria.  It details the issues whereas the Akin/Valent document gave guidelines.  I think that the two documents had very different purposes in that the one was raising discussion topics and exactly that - guidelines.  Whereas this other one, Moldering's was meant to be like a preliminary official diagnostic proposal and being with that goal in mind, they are going to give more details and instructions for it's meant for lesser doctors to know how to do it.  

Yet, both of these documents are GOLD for us patients and our lesser doctors for this helps them to gain real understanding!!    I sent a copy of this Molderings document to a doctor in Spain who is a researcher in mast cells but doesn't understand mastocytosis and he was very pleased to get it!!  It helped him to gain more understanding of how widespread this disease can be in that it's not being limited ONLY to the clonal form, it indicates that the activity of the mast cell when it's not performing correctly can be a much larger patient group than originally believed and this is important to these other doctors.     I'm also sending this to not only my own doctors but also to any other Brazilian doctor who has any kind of interest in mastocytosis that I've spoken with for in my sending out this new form information, it means that other patients who don't fit into the SM category may not be overlooked the next time!!!

In fact, I was speaking to a hematologist today that I'm going to be seeing.  If I had seen him 3 years ago when we had started our hunt he'd have done the typical SM criteria and I'd have been booted out his door when I wouldnt' have fulfilled the criteria!!!  He's a colleague of Dr. Akin and I've not gone to him cause I couldn't afford him!   I have to pay over $500 dollars to see this man and that's just for a consultation! OUCH!  So if I had seen him 3 years ago, and he gave me his opinion, because he came with such high approval, we'd have totally discarded masto and I'd have been running around in circles ever since wondering what it was that I have!!   Yet, this doctor has been accepting from me all of these new articles and new forms, including those from Akin, and today, this doctor has a much more wider understanding of the different forms of masto!   He wouldn't be booting me out his door today if I were hunting still for the disease!!


So, my friends, take these articles we get and SEND them to you various doctors!!   These articles are very EDUCATIONAL and we patients can help to pave the way for those who have yet to be diagnosed!!

PAY IT FORWARD!!!!

Thanks for that clarification, Heather. THAT is the article that I was speaking about    From what I can tell, the major difference between the two sets of criteria/guidelines is that the Moldering/Afrin group WILL make the MCAS/D DX w/o laboratory evidence as long as there is a "unique constellation of symptoms caused by mast cell activation" as well as meeting other minor criteria. Is that how you are reading it as well?

Anyone know when the WHO criteria for MCAS/D will be published?

Thanks!

Julie