I hope it is OK I put this is  a separate post, as well as in the west coast one. I want it to be easy to find.

I just came back from UC Davis, where I saw two doctors who know about mast cell disorders, and I know there are at least three more. I originally found them by doing a search on doctors, mastocytosis, and California. Several of these doctors participated in a paper called Mastocytosis, the Great Masquerader (http://www.ncbi.nlm.nih.gov/pubmed/16461996) and Contemporary Challenges in Mastocytosis (http://www.ncbi.nlm.nih.gov/pubmed/19639428).

I was supposed to see Dr. Eric Gershwin, who is one of the authors on these papers. For some reason, he was not in, but I saw Dr. Fatima Ali, who is an intern, and another doctor who was supervising, and only ran in briefly.

Anyway, Dr. Ali was VERY friendly, interested, and seemed quite knowledgeable. She talked to me a lot about what medications I am taking, and much more about how much I could safely take, and what concerns there might be. She went over the use of the Epipen much more thoroughly, not so much HOW, though she did do that, but also when. As I am a leaker (don't often have anaphylaxis), I have been very confused about when I should use it.

She knew about the new WHO criteria, and also about the proposed MCAD criteria, though they are not as big into the MCAD there. Doesn't mean they wouldn't treat necessarily, just they called my issue idiopathic for now. They were very emphatic that I do need treatment! Also, that even with my lower tryptase, that I need a bone marrow biopsy, as my GI biopsy shows signs, but the report was not clear enough to give an absolute diagnosis.

So, the doctors at UC Davis who know enough about masto to be involved in research are M. Eric Gershwin ( http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=297&searc... ),  Rosemary Hallet (  http://www.ucdmc.ucdavis.edu/search/faculty/biodetail.asp?bioid=881&searchtype=&...), Suzanne Teuber ( http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=474&searc... ), and the internist I saw, Fatima Ali (Allergy and Immunology).

The local PNW support group also gave me the name of Natalyia Kushnir in Berkeley. ( http://www.allergynk.com/index.html). I did write to her to ask if she knows about MCAD, after calling the clinic and talking with their reception. The receptionist told me to email the doctor, and even gave me her email, but I never heard back from her. I may try again, as she is slightly closer than UC Davis, for me.

The docs at UC suggested I find a local hematologist, and talk to them about doing the bone marrow biopsy, so I woudl not have to travel.  They even think a hematologist would know enough to be able to follow my treatment. I will have to see if that is true. However, they are well set up to do the testing at UC Davis, and would have me back if that is what I choose. There is also Dr. Gotlieb at Stanford, if I got an actual diagnosis based on the bone marrow biopsy.

Your doctor needs to do a referral to UC Davis, if you choose to go there. It can also be a bit frustrating, as I was referred to one doctor, given an appointment with another, and saw yet a third. But it turned out fine, and seems that most of the doctors there are knowledgeable.

Well, I don't know how much of what they said is very specific to me, and what is more general, so take what I say with a grain of salt.

They didn't really change anything, just gave me more confidence that I was not taking too much. My own doctors are not familiar with using these higher doses. They aren't trying to stop me, but I have been concerned they wouldn't know what side effects to look for.

On the antihistamines, I was told that Zyrtec 10 mg up to 4 times a day is NORMAL for some people. I only need to take it in doses that high sometimes, usually only needing it twice a day. But they told me it is perfectly fine to take more. Also, just to add in here, my cardiologist, who I see for a patent foramen ovale (hole in the wall of the heart), told me that Zyrtec is the safest antihistamine for heart issues.

On Zantac, I was told up to 300 mg 4-5 times a day is OK, and that for some, that is what they need every day. Again, I only take that much on bad days, but they confirmed it was OK for me.

I am doing OK on a lower dose of Singular than some on this board take, so we didn't discuss that. I take a higher dose of ketotifen (6 mg), but still well within the expected ranges, so again, we did not discuss that. And I cannot tolerate Allegra, so we didn't talk about that.

They also confirmed, for me, that taking Benedryl as I do is fine. I find the Benedryl effects different things than the other antihistamines, so am more likely to take it when I have exposures to scents that I am reacting to, or if I get a headache. Also, if the reaction is more sudden, and I want faster relief. Dr. Ali explained that each drug affects different receptors, so will respond differently.

For example, for me, I have a lot of GI reaction to perfume, including throat swelling. For me, taking Zantac helps the most, though I will also take Benedryl. I've been on treatment now for over 7 months, and as my reactivity levels go down, I am better able to tell when and what I am reacting to. I used to just be in constant reaction, so it was hard to tell when something new triggered me.

On the Epipen, again, this was instructions for me! I have only had two full blown anaphylaxis episodes in 15 years, so it is far from frequent. Both times I made it through without Epi, though they were both scary. What Dr. Ali told me was that I should only use it as a last resort, when my throat was closing enough that it was hard to breath. See, I get throat swelling and trouble swallowing frequently. So, if I used the Epi every time my throat swelled, it would be too hard on my body. Usually, extra antihistamines are enough to stop the reaction.

I think people who more easily tip into anaphylaxis, and much more quickly, need to use it sooner. In spite of my never having had to actually use it, she told me I should ALWAYS have a fresh Epipen on hand. They only are good for about a year, unfortunately, so I will have to replace them even when I don't use them, but better safe than sorry.

One thing they really liked is my medical history that I took. I keep a Word document on my computer with my drugs, my current symptoms, and other info. For them, I included current medications and supplements, the antihistamines I currently take, and what symptoms are improved while taking them, the drugs I react badly to, and what the reaction is, ALL possible mast cell caused symptoms, including the ones improved on the treatment, and other conditions that I have, or have been treated for. I try to keep it well organized.

They loved it! It made it much simpler to look over a complex medical history. When I see my regular doctors, I have a simplified form of this, showing current symptoms, current meds and treatments, and what I want to focus on during that appointment. When I have a new appointment, I go through, update for changes in meds or symptoms, and print it out. Doctors are always telling me they wish every patient did this. It also makes sure that info I want, gets into my medical record, as they are required to include it.

Dr. Ali suggested that I always carry a copy of the paper I gave them, so that medical emergency people could read it. She felt it is a good idea, even though I wear a Medic Alert bracelet. I haven't yet pulled together the forms recommended for emergency care, as that hasn't quite been clarified for me, yet, but I could carry this paper for now.

Susan, sorry to ask if you've listed it elsewhere, but how did they make your diagnosis of mastocytosis?

Ana

Thanks so much for the details Sharon

Yes, I agree. I am pretty pushy about getting as clear a diagnosis as possible. Once you know what you are dealing with, then you might get more creative about how to treat, but it has to be done based on a clear understanding of WHAT you are treating.