First, I really appreciate the support I have received from many of you.  I have wanted to post about this, and with all of the recent talk of doctors, I felt this was an appropriate time.

It is my profound hope that the ultimate goal is to get all those with mast cell disease on the road to recovery.  For some, that might be with Dr. X, while for others that might be with Dr. Z.  And for many, it might be through some unknown doctor out there that quietly researches challenging patient issues and treats them effectively.

I sincerely hope that ALL of the doctors who are researching and treating patients with this rare mast cell spectrum are actively teaching other physicians throughout the world, so that more patients can be diagnosed sooner and treated more effectively.    The best physicians are those who are non-egotistical, willing to learn from experts in order to give their patients the best care possible, and work with other doctors to make them more knowledgeable.

This is not a competition of who is the best mast cell doctor.  This is race to get more people healthy and back to living a more productive, fulfilling life.

May all of you be blessed to find a doctor who is compassionate about your case and finds the answers you deserve.

EXCELLENT POST, KATE!!!!!!!!!   I couldn´t have said that better myself!!   You are so right, this is not a competition as to Who´s the Best!!  This is really a matter of who can you get to who can help you GET BETTER!!!    We all have our many issues and when it all boils down to it, it´s really a matter of finding adequate medical attention!!   That doctor can sometimes be right in your home town and  you shouldn´t snub your nose at that possibility!!  Some of my very best doctors are my small town doctors and I depend upon them for a great deal!!  They are WILLING TO LEARN and they are CARING and this makes for an excellent combination!!

So YES!!!  you are soo right and thanks for saying this Katie!!!!

I am very surprised to hear that Dr. Akin is not accepting new patients. Has anyone else heard this???? I can email him directly and ask for you.

What about Dr. Castells? Is she accepting patients? She is excellent also!

I think it's the reverse, but I heard somplace that Dr. Akin is on leave right now, so that might have something to do with his not taking new patients at this time.

Avonlea,

I was just out at Hopkins last week for an appointment over at the Bay View location.  I've seen an allergist on a few occassions out there since all the mast cell issues popped up a few years ago.  (I'm in Montgomery County in Maryland.)

I must say that although I very much like the physician who I see, he absolutely does not believe in MCAD/MCAS.  I have a positive biopsy, highly elevated CGA and urine methylhistamine along with a long list of classic symptoms.  Still, he contends my issues are not mast cell related.  Frustrating to say the least.  Based on my experience, I have to agree with Lisa that JHU is not the place to go for mast cell issues, particularly if you do not fit into the classic SM diagnostic criteria.  They just don't seem to be forward thinking in my opinion.  

In an effort to find someone locally, I contacted Dr. Metcalfe at NIH asking if he knew of any practicing physicians in the area with expertise in mast cell disorders, especially MCAD.  (Given that NIH is just up the road from me I thought he might be a good resource for local "experts.")

Here is his response to my inquiry:

"Mast cell activation disorder as a diagnosis is still controversial.  There are thus no specialists in the area that I know of with a particular expertise in this diagnosis.  

We do recommend an evaluation by an allergist at least familiar with the proposed diagnostic criteria.  One such practice is headed by Dr. Michael Kaliner.  He or one of his colleagues could listen to your symptoms, do a medical evaluation, and perhaps offer advice.  He has offices in Silver Spring and in Chevy Chase."

I haven't yet contacted the physician suggested by Dr. Metcalfe, but I do plan on it.  Perhaps you would find the referral helpful as well..

Keep us posted on how your local search goes for a doctor.  Perhaps between the two of us we can find someone in the DC area.

Wishing you well,

Julie

P. S.  Kate, great post...didn't mean to highjack it!  I so agree with your points.  I have two great doctors (rheumie and gastro) who have both read up and educated themselves on mast cell issues.  They may not be "experts" but they are eager to learn and willing to partner in my care as it relates to MCAD.  As you said, it is not a competition, nor should it be portrayed as such.  It is a journey to better health.  Bravo Kate!

From what I understand, Dr. Metcalfe is one who only truly believes in the SM form of masto being the only real form.  I've heard comments saying that he doesn't really believe in it and doesn't accept the MCAS diagnosis even though he was part of the consensus committee to oficialize this diagnosis.  

There are two camps of thought out there, the MCAS and the SM groups.  They are at a loggerheads over this for the one insists that the other doesnt' exist.   This is why it's got us patients caught in the middle!!  

I can't argue the details because I'm no doctor, but it may be that depending upon where the genetic defect is, the one form may develop into a clonal disease whereas the other is a malfunctioning disease.  But only time and research will say the truth.  

However, this is why his reply was the way it was for he doesn't approve,. from all I've heard, of the MCAS diagnosis.  They've not yet been able to "prove"  the activation form whereas the clonal form they can.   Doctors and scientists go on PROOF! and rightly so.  But it's hard to deny that with some of us you can't find the proof and yet we still go through misery!!   From all I know, depending upon the genetic defect, the form of the MC disorder will be different.

Avonlea, definitely go to Dr. Castells!  However, I think that both you and Julie should try checking out this doctor for in order to work with Dr. Castells you need to have a local doctor.  It might turn out that he's worth trying.


Speak with Patricia, ladies.  She's already working with Dr. Wilson at the NIH and knows the ropes within the region.  You three should start up a MC support group in the area!!   Pat's got a restaurant and it would be a great place to gather!!!     The next time I'm up in the region, it would be great fun to meet you all!!!!!!!!

Lisa

You can get Ketotifen from Clark's Pharmacy in Bellevue Washington. The pharmacist there takes it himself, and is very nice. They will ship to you. Once you know you can tolerate it, they will ship you several months supply at a time.
800.480.3432. Your doctor needs to call in a prescription.

I'm glad to see your doc is willing to help you!