Hello! Over the years I have sent out the information below to so many people who have contacted me from across the country to learn about their newly diagnosed mast cell disorder. I have compiled a list of great tips (at least that is what people tell me!) regarding how to help yourself get better. So, here they are:

The first thing to think about is your doctor. Is he one of the few researcher/specialists in the country or simply a local doctor who is trying to help you? Then consider how you were diagnosed. Did your doctor tell you that you might have Idiopathic Anaphylaxis or masto or some other form of mast cell disease? What type of doctor is he? Did that doctor put you on specific meds for that reason? How did that doctor determine that you could have mast cell disease? Did he base it on your symptoms? How knowledgeable do you feel about IA/masto/mast cell disorders -- novice or expert?

Okay, assuming that you don't know too much about mast cell disorders, I will give you some facts. First of all, I pose questions regarding your doctor, because most doctors don't know much about IA/masto (even though some think they do.) The only true care you will get is by becoming a patient of one of the handful of mast cell disease researchers/specialists around the country. (They take people on as patients because they know they can help us. It is not necessary to be part of their research to be a patient.) Being a patient of a researcher is fabulous, because they know exactly how to help you and they don't have too many patients, so it easy to get in with some of them.

For any type of histamine release problem, such as mast cell disease or idiopathic anaphylaxis, it is necessary to be taking prescription dose histamine blocker meds on a daily basis as preventative. There is a world of difference between only taking the meds when needed (ie: when you feel an attack coming on) as opposed to daily and feeling so much unbelievably better. The researchers generally start a masto patient on a basic regime of H1 (zyrtec or allegra) and H2 (zantac) blockers. For example, I was started on 300 mg zantac (twice/day) and 10 mg zyrtec (twice/day). While it helped, it was not good enough. So, we added 10 mg Singulaire (once/day) and we switched the morning zyrtec to 180 mg allegra. For me, this is great. I am one of those success stories that you will find of a person who feels perfectly normal all day, and just a little unwell after I awaken in the morning and late at night when fatigue sets in.

So, you need to consider if you are on the right meds. The ones I mentioned are the standard ones that are tried first. There are stronger meds that the researchers will prescribe if these don't work.

Now, the most important thing you can do is to see a researcher right away and become a patient. The 2 top mast cell disorder doctors  in the US are Dr. Cem Akin, MD., Ph.D. and  Dr. Mariana Castells MD., Ph.D.. Both researchers/specialists have joined together to develop the first Mast Cell Disease Center. They are located in Boston, MA at  Brigham & Young University Hospital. Known for their compassion and knowledge, these doctors are helping mast cell disorder people each day to get better.

My doctor is Dr. Akin, although I don't live in Boston or even on the east coast of the US. It is normal for their patients to travel the country to see them for diagnosis, and then have the local doctor manage day to day medical issues. These doctors are only an email away and are happy to consult with your local doctor and help you as much as they can.

For contact information, feel free to private message me and I can send you their email addresses.

(Archived message from Shelley43 - original forum)

Deborah - thanks for the tips!  Can you share with me your favorite doc?

Thanks,

Shelley


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Shelley43

21 April 2010 02:50 PM

(Archived message from donlansdoe - original forum)

Thanks Deborah I guess I'll be checking out my insurance possibilities, should I be setting up an appointment with an alergist first, I'm still confused and a bit overwhelmed.  Anyhoo lots to read still.  This is a great forum.  Doe

26 May 2010 08:05 PM

(Archived message from msauce - original forum)

Thank you for the info.  I was lucky enough (after three previous docs telling me my spots were dry skin) to find a dermo, who did a biopsy.  After diagnosing masto, she knew of an allergist who specializes in Masto - went to Harvard.  The other Allergist in his office went to Duke.... I am very fortunate to live in an area right now where I have the help and the expertise.  Like I said earlier, three previous docs did not know anything about this disease (or whatever) and I was going crazy with these symptoms.  Now, at least I can move forward.

03 December 2010 02:57 PM