I don't know Dr Afrin, but to give my 2 cents worth: maybe he had a bad day himself, were fedup of looking day in and day out into the faces of desperate people. (Most people are desperate when they get to specialists) I don't know.  

This is completely horrible! I am furious to read of how you were treated, and I am really losing my respect for this doctor, as yours is not the first negative report that I have read. I am so sorry that you were treated this way, and it sounds as if you wasted your time.

It is important to note that Dr. Castells DOES TAKE  patients without confirmed diagnosis. She is the main mast cell doc for children (as opposed to other specialists) , and we have had patients on this forum who have called her office, said that they have suspected mast cell disease, and gotten an appointment. They did not need a referral or a previous diagnosis. (She also sees adults.) So, ignore what Dr. Afrin told you. I am hopping mad to know that he attempted to dash your hopes for your daughter. That is irresponsible, unethical, and a list of other things. After reading your report, I may consider removing him from our forum as a helpful mast cell disease doctor. (As I mentioned, you are not the first to report some negative things about this doctor.)

What you need to do is to contact Dr. Castell's office, tell them that you and your daughter have mast cell disease, and ask if it is possible to get an appointment or a phone consult at the very least. Write out details of your daughter's symptoms before you call, so that if they question you, you won't forget out of nervousness. You shoudl try to get an appointment for you AND your daughter. Dr. Castells will get you on the right track!

Don't forget to check out mastokids.org for more info and people who are helping their own mast cell children.

You might not need to see a specialist just to try various medications.  I was able to get most of what I needed from my GP and local allergist.  That being said... I've been two see two very high-level specialists.  The first one I went to see was about my lymph nodes (turns out to be mast cell related... but it's a pretty freaky symptom, even for people like us).  The second one was Dr. Castells.  I went to see her because another manifestation of my mast cell disorder is horrible pain during my cycle.  My local GYN is great and gave me the medication I needed, but I was hoping to figure out a better solution than being "drugged" (on painkillers) for a week every 3-4 weeks.  

Deb has advocated seeing a specialist early in your journey... and I bet for some people that works out great.  Personally, it was not easy for me to travel to Boston.  I was able to figure out a lot by trusting this forum, trusting myself, and working with my local doctors to find one little solution at a time.

Heather

ps - Sorry you had a bad experience with Dr. Afrin!  I thought Dr. Greenberger (at B&W) was very, very nice... but with most doctors I don't care what their bedside manner is like as long as they can help me.  Dr. Castells was not exactly nurturing with me.  When I needed that I talked to a good friend... I even saw a counselor for a while.  It's hard coping with a rare disorder that changes practically every aspect of your life!!!  Being emotional doesn't mean you're crazy... it means you're normal.

I can't believe it!!!! Thank you all so much for your kindness and encouragement!!!! I'm so new at this I must not have checked the right box somewhere and no responses to my post showed up in my email. I thought I'd done something horribly wrong by mentioning a dr by name and complaining. I felt so nutty, I finally decided to log on and I feel euphoric that there was so much support, compassion and a reality check or two.
 I agree that these brilliant "maverick" researcher types often have difficulty relating to us earthlings. That's why I have kept my cool up until now and disregarded his previous dismissive attitude despite feeling so much frustration at the drive and child care and hotel costs every time I see him. I also have compassion for him as I would not want to have to deal with all these people at their wits end. Desperation does make people crazy(er) and I'm sure it is part of the job to get a bit of a God complex when everyone is looking to you to be the authority and savior. I would not want to be in his shoes. Still....that was pretty cold. Not that I haven't been treated that way before. It's still a shock though as I can't imagine treating anyone who is suffering over their child's pain like that. However, it is also true in my experience that it is suffering that brings compassion and that if you have never really felt that pain - you can't relate to it.
 I am... Hmmmmm... Lucky or unlucky - I can't decide ... To have suffered so many different types of emotional and physical pain that I must be (unbeknownst to me and without my permission) in training to be a bodhisattva. I really think you should get a vote as to whether you want this type of spiritual boot camp but it's been my observation that you don't get a vote. Anyway, whenever I see anyone in pain, my body goes nuts and my empathic response goes into overdrive in sympathetic response.
 I did so much research around my "fibromyalgia " diagnosis that I should be a rheumatologist and a naturopathic dr by now. One thing I do remember reading was that some ridiculous % of fibro sufferers had childhood abuse histories. It always made sense to me that a body would short circuit later in life if its nervous system was constantly under fire when trying to develop. Thinking of my daughter having to suffer even an iota of what I went through makes me feel like every mast cell in my body is degranulating every chemical known to man and some not of this world.
 I am going to make an appointment with the "best" allergist/immunologist in town and see if he will work with dr Afrin. I saw him once and he completely poo poohed my MCAS self diagnosis. Talk about a god complex... Anyway I will try again and try to contact Dr Castells although I feel discouraged by dr Afrin 's laissez-faire attitude about meds. Maybe there isn't a specific thing to target a specific symptom but they should tell you there is so that you will have hope. Lie to me, I can take it!!! Or just put forward your best guess and look official.
 I wouldn't wish this on my worst enemy but I'm so glad not to be alone in it. Seeing evryone's responses has lifted my spirits !!
 Anyone else who has found a good dr to treat their child for MCAS - please let me know how you did it!

I am really sorry that you have had this experience, and I am glad that you have found encouragement in the whole range of responses here. You are in a difficult and complicated position dealing with your own chronic health issues and your daughters needs as well. I don't want to get into the debate about this particular doctor and your recent interactions with him, I don't know him at all. I do however know several doctors on  a personal level, in addition to the many I have dealt with professionally, and the good ones I have found to be very compassionate, however in order to be a good doctor sometimes they have to learn to put that aside in order to exercise sound medical judgement and do the tough things they have to do. They go into medicine because they are compassionate and want to help people who are suffering, and when faced with situations that are beyond their ability to help it is really tough on them. They are also human, and at times I guess this can be a difficult thing to do without compromising their bedside manner.

Dealing with this type of condition, for many of us,  is like a marathon. We really want to just sprint to the finish line and get the diagnosis so that we can get on with treatment that will help. Unfortunately that won't always happen, and we need to pace ourselves for the long haul. I know how hard that is when it is our child suffering in the meantime, but keeping a strong steady pace might be the best way to go. I can only reiterate what others have said, keep at it, work on local doctor support, at the same time as looking into options like Dr Castells. At the same time learn what you can here by reading and asking questions, and post an introduction to your daughters story, what you know so far and what has been investigated for her that leads you to think it is MCAS. I have had so much help here in figuring this out for my son, I wouldn't be where I am in managing his situation without the support of this forum. But not so that I could self diagnose and do it in spite of lack of doctor support, it has allowed me to continue to seek out the medical support we need, and take what is on offer from them, or walk away from others, and get closer to the finish line rather than give up the race altogether.

It's a bit like having a support crew, this forum is a key member of that team, but so are the doctors, as are the good friends who give the emotional support I need at times, or the distractions so i can keep things in perspective. Gathering the right support crew around you, and knowing what you can get from each member of that team is crucial, it takes a team because you need different things from different people. Hang in there, take a breather when you need to, and use the support that is  on offer.

Ruth

I agree with BlueSkies 100%. That is exactly what I was thinking! Very good advice there. I have found the best success comes from finding a pleasant doc who will contact the specialist, like the Boston docs, for guidance. The top allergist who thinks he knows it all and has already been condescending to you won't change, and I guarantee that he probably knows very little about mast cell disease (even though he thinks otherwise).

Hi Meemshutchins, welcome to our forum!!  

I am sorry about your experience, it's not easy when you are going into a new doctor consult and you are desperately hoping for ANSWERS!! It hurts deeply to run into troubles like this and I fully understand how you feel.  Unfortunately most of us have had this same experience more than once!  I had this happen to me more than once and there was one time when it was MUCH WORSE than what you experienced for the doctors I saw, who were the highest authorities in Brazil (where I live) on carcinoid syndrome sent me home not only totally HOPELESS and without a clue, but also with a false "diagnosis" of Hysteria!  They did one thing right - ruled out the carcinoid for certain!  But to go home after spending about $2,000 dollars for nothing, it was a very hard thing to swallow for I came home SHATTERED and so emotionally battered that I was a horrible mess and had to really fight to regain confidence in doctors again.  

It's hard when this happens, but it was an excellent lesson that I learned.    It taught me that doctors are not Gods and that they make mistakes.  These doctors did not intentionally mean to harm me and I don't believe in sueing doctors over being human.  They did their very best to help me but they don't know masto!  Masto has got to be one of the most confusing illnesses to doctors for the patient can have it and not show a single thing wrong with their tests!!  The vast majority of doctors don't even know that new forms exist and they are depending upon information which is horribly outdated and wrong to give them understanding!   The other lesson I learned is that I WAS EXPECTING WAY TOO MUCH FROM THESE DOCTORS!!   They are supposedly high authorities in carcinoid and you would think that in being high authorities that they are going to know everything there is to know about their disease and enough about the competition of the differential diagnoses to at least be able to test you and put you walking in the right direction!   WRONG!!!!   I was so desperate that I could taste it and I badly needed answers and had gone a long distance to be able to see these doctors and to have help!!  Instead, I had an extremely patronizing doctor who "felt pitty" for me because he believed I had Munchausens due to the "suggestion by one of my doctors" of carcinoid syndrome and that I had then "developed" all of the other symptoms after I had researched it!!   HOW INCREDIBLY HUMILIATING!!!  Yes, I did cry, but there I was, going into anaphylaxis there in his waiting room and he didn't believe a single thing he saw and then after I took some antihistamine and began to recover and went seeking where he had taken my husband to give him his advice as to what to do with his poor, emotionally disturbed wife, the man took my hand, so tenderly in his, looked me in my eyes and gave me his "diagnosis!"    Is there any wonder I went home totally shattered?!!   All of this because my masto came out of hiding with my hysterectomy!!   I had one male doctor after another all jump to the very same foolish conclusion that my histerectomy had messed with my mind!   Yet, when my women doctors found out about this, they jumped on board quicker than you could blink and it was with their help that we found a great many pieces of the puzzle!!  

An INTERESTED DOCTOR can take your case much further than you would think, even if they don't have a clue about masto!!!!

Yet, it was only after I found my masto specialist that things began to really change for she knew how to hunt down masto.  Or so she thought for I'm not an SM patient and she went up against a brick wall with my case since she didn't know that MCAS existed and didn't know how to interpret my exams to understand what they were saying.  In fact, as much as I love my dermatologist and think that she's an excellent doctor, she's not having an easy time with the MCAS patient.  I've since sent on to her several patients and one of them is one of my doctors who thinks that he has MCAS.  This doctor was likely and MCAS child and has gone through many allergy related reactions since his childhood including syncope.  Other doctors have gone over him with a fine toothed comb and come up empty handed.  He's autoimmune and showing vague RA markers and yet has masto behavior and responds positively to masto meds.  But when I told him to see my doctor she did what you say Dr. Afrin did to you - blew him off!!   She said, "Are you flushing?" and when he said no, then she said, "You don't have masto then!"   What she doesn't know is that there is a pre-syndrome MCAD situation and a post-syndrome MCAS situation.   This is something which is only being uncovered in research now and that the authorities are only now beginning to recognize and understand.   This is the problems the children are facing, they are showing activity, but they are not showing the syndrome.   My own children are this way and my dermatologist, who is a pediatrician, could not and refused to believe that they had MCAS.  I insisted and was persistant and she began to listen to me, but I also used my own pediatricians in my town, for my dermatologist is about 2 hours away from me and I don't often see her - and we began testing and sure enough WE FOUND EVIDENCE, but not a one of my children shows the syndrome, which is the flushing, and the other constellation of symptoms.  She was shocked, but even so, by the time my other doctor went to see her, she was still not quite seeing the connection.  My doctor came away and complained to me that she was dismissive and didn't give any attention and was not interested in his case.  Yet, he took his daughter, who is also showing MCAS symptoms, and with his daughter my dermatologist was much more attentive and gave good treatment, while he got totally ignored!!  He was very upset and very disappointed, just as you are - and I must say, rightly so.

Meemshutchins, I have to say that as much as I was disappointed in my dermatologist, I would also have to say I understand your being disappointed in Dr. Afrin.   I have spoken with Dr. Afrin several times over the internet and I can tell you he has a very keen understanding of MCAS.   But, like my dermatologist, he is extremely busy and has much to learn about this disease still.  And like any of us, vulnerable to having bad days, vulnerable to making a wrong decision and vulnerable to being human and thus frail.   I have learned not to expect way too much with doctors, especially new ones whom I've never been to before.   I learned my lesson a while ago that when I go to see a new doctor that I must go with my emotions guarded so that I don't expect more of that doctor than he/she is able to deliver. I also try to not expect a good "bedside manner" for I've learned that this shows absolutely nothing about the doctor's capacity as a physician, and unfortunately, there is way too much pressure put on American doctors to see a quota of patients today and they don't have the freedom they once enjoyed to see only one patient at a time and by what you are saying, Dr. Afrin had more than one patient to see and obviously more than one consultation room with patients sitting there expecting not to wait too long to see him.  This is often why patients get upset with doctors, it's one of the major things we complain about.  But, even when I have a doctor whom I've worked with for a long time, I've learned to be more giving and forgiving for they have a great deal of responsibility in their hands and are given very little room for being human and it makes them extremely cautious when dealing with patients.  They have a great deal to lose if they make a mistake and if you consider how it would be for you were you in their place, it is not easy for medicine is extremely complex.  The more I learn, the more understanding I am as to how hard it is to be a doctor for each is expected to be a Sherlock Holmes and instead most are poor Watson.   So, I try not to be overly expectant for even those doctors whom I've felt are on board show me at times that they aren't and often for reasons they won't share with me.  Do I get disappointed?  Yes!!!   But I know better than to toss a good doctor out on his ear!  I've learned that it takes a lot more than that for me to decide to look for another doctor.  

So, as to my dermatologist, I had a chance to explain to her about the pre-syndrome and post-syndrome stages of masto now and I spoke with her about my doctor and had to nicely say that she didn't give him a chance to tell her his history and once I told her, she realized that she'd jumped to conclusions and made a mistake.  He told me she'd just come out of a business meeting of some kind and that had been in this meeting for over an hour.  This made him upset, so he went into his consultation already on a bad note with her since he doesn't do this with his own patients. Yet, he's a small town doctor with not as much to occupy him as she does.  However, I know her well enough by now, 6 years and counting, and I know that she's got herself way, way overworked with being the president of the dermatological association for our state and with being the head of a research project, a professor at one of the University hospitals, and working at that hospital as well as running two clinics constantly jammed with patients!    She's a constant whirlwind of activity and she spreads herself way too thin and there are times when she's just not all there!  I've had to call her back to my case several times and as much as I am sorry for this I still would not change her for another doctor for she's got an incredibly open mind for a doctor and catches on quickly and KNOWS MASTO better than any other doctor I've spoken with!!!!

Now, on to Dr. Afrin - as I said, I've spoken with him enough to know he's got an impressive vision of MCAS!  However, even though Dr. Afrin is an excellent hematologist, he has not been way too long in the masto arena.  I believe he has about 6-8 years of working with masto patients under his belt.  He has not had the benefit of being trained at the NIH as Dr. Akin has nor with any other authority.  I don't know to what extent he speaks with the other masto authorities, however, I believe his first opportunity to personally meet them was at the TMS conference in Boston last year.  He has written a paper with Dr. Gerhard Molderings, and authority, an excellent proposal for MCAS.  But the fact that he was not tutored by any masto authority is important here for he's learning the ropes.  He's trying to go slowly for there are some patients who don't respond well to the medicines because of the inert ingredients in the pills, or the dyes in the liquids.  His approach is a more moderate approach and as a physician, it is his right to chose his own methods of approach.  He prefers to go cautiously for he knows that each patient is different and he wants to personally tailor the meds to meet each patient's needs.  

Now, as to his statements of dealing with other doctors, this is very true, I'm sorry, but this is very true and it's not just for Dr. Afrin!!  It's obvious by what you say that this is something which upsets Dr. Afrin very much.  I spoke with him about seeing one of our moderators and he told me that as long as this member could not find a local doctor willing to work with him, there was very little he could do to help this patient!  He wants to work with other doctors, but if those other doctors won't seek him out for whatever reason there's nothing he can do about it!   I've seen this close up too for my dermatologist has not had a single one of my doctors contact her for advice as to how to work with me!!!  I've asked, I've sent her phone number her email, etc, and nothing works!!  They won't contact Dr. Castells or Dr. Escribano nor even Dr. Afrin!!  Not even my dermatologist will step out and speak with these authorities and it has frustrated and disappointed me to no end!!!  It's disappointed me in my dermatologist as well as in my other doctors, but I had to come to the place of understanding that this is their right and their decision and there is nothing I can do but to respect my doctors for their right to not confer with colleagues until they feel the need to do so.   Now, yes, to my understanding this is an absolutely absurd attitude to take as a doctor and we probably would not take this approach, but we are not doctors and we don't know why they do this or what lines they draw before they chose to go to a colleague.  Not being doctors, we find this unacceptable, but again, we are not doctors and we don't know why they make the decisions they do.  We have a choice, however, to either move on or to TRUST our doctors for whatever reasons they choose and respect their decisions.   I finally realized that the reasons why my doctors didn't reach out to the international  authorities was due to language barrier.  I've still not figured out why they won't speak with one another, however.  This makes no sense to me for my local doctors know that they don't know this disease.  Again, I must accept their decisions to do this for they have their reasons.   As long as I'm not put into danger, there's not much I can do otherwise.    Granted, another person may not put up with this, but I live in a small town and have run through about most of the doctors in my city who are capable enough to deal with my case and can't afford to toss out a good doctor.  


Now, as to Dr. Afrin and his challenges in working with your daughter, I have spoken with him about another patient and her daughter.  He told me that he just can not see the children, he is not qualified to do so.   If Dr. Afrin were to work with the children, he would lose his license to practice.  Yet here's the problem, he can speak with a pediatrician at MUSC to see the children, but he loses all jurisdiction and if the pediatrician refuses to hear his input, there's not a thing he can do about it - the pediatrician is who  takes over and can totally refuse to listen to anything Dr. Afrin has to recommend!  He doesn't have a clinic specializing in masto patients where he has pediatricians who are on board with him like Dr. Castells has.  He's not qualified to work with the children and his hands are totally tied!  Trust me this upsets him.


So, to sum this up, I hope I've been able to give you a bit more insight as to Dr. Afrin himself.  I have heard other patients complain one time or another about Dr. Castells, Dr. Akin, Dr. Schwartz, Dr. Metcalfe, Dr. Gotlib, Dr. Escribano, Dr. Butterfield, etc, etc. etc.  Yes, these doctors are authorities and they know masto so well that you can't argue with them, however, they each are extremely busy, they each have their viewpoints regarding the disease and they each have their area of speciality and focus and methodologies as to treating patients and let's not forget bedside manners.   If Dr. Afrin and his ways didn't agree with you, then don't hold that against him, just move on.  You've been given excellent advice by the others here and I suggest that you consider it.  We all have to find out own way through this and there are no simple nor quick answers, this much I can promise you, but as long as you keep reading and learning and pressing on to find answers, you will find them, they will come to you.  DON'T LOSE HOPE!!!  You might want to speak with Dr. Afrin about this and give him another chance, but if not, then don't hold it against him and just move on.  He may have had a bad day and since I wasn't there I honestly can't say how it went.  I've not personally  met him, so I hate to make any judgements one way or another.  I do know he cares and that he's a good doctor, but again, you are the one who needs to judge this for yourself and choose what you are going to do.  

I am sorry for the long post, but I just wanted to give you a different viewpoint on this.   I hope this helps!


Lisa