Here are other sources of great info on mast cell disease are:
1. TMS website: www.tmsforacure.org
2. Mastokids.org

Also, if you decide to make an appointment and go see a researcher, here are some tips :

Make sure that someone goes into that exam room with you so that you can remember and absorb all of the tons of info that the doctor will share with you. It is easy to miss something because you are so wrapped up in the actual appointment! Here are questions to ask:

1. After hearing my story, does this appear to be masto or mast cell related? If masto, which one (indolent systemic, aggressive systemic, UP, etc) Or do I sound as if I have Idiopathic Anaphylaxis?
2. What makes you think this?
3. What are my treatment options, specifically meds?
4. What meds can I take? Should I take daily meds as preventative in order to keep my condition stable and calm?
5. What if I am on those daily meds, and I start to have a rush of worse symptoms (like the beginning of an attack). Can I take an additional med, such a zyrtec if that is what I take daily? If that additional med doesn't slow down my symptoms, should I take a more fast acting med such as hydroxyzine to stop a potential attack?
6. How would I know at what point to take an additional med or a hydroxyzine? In other words, what symptoms are severe enough for me to take
action?
7. How do I know when to use an epi pen? Should I use it only if I get to the point of feeling lightheaded?
8. What types of triggers that are common to most masto people should I avoid?
9. If I know I am going into a stressful situation, and I generally react to stress, then can I take an extra H1 such as zyrtec as preventative?
10. Should I keep a food and medical diary to help determine what my triggers are?
11. Can we feel comfortable enough assuming this is what I have based on my symptoms and my good response to meds and carry on under that assumption...or do I need a bone marrow biopsy?
12. If I need a bone marrow biopsy, can you and your hematologist do it or do I have it done elsewhere? I hear that only a few places in the country
can correctly analyze the biopsy, so is your facility one of them?
13. What is the long term prognosis of what you think I have? Can I expect a normal lifespan?
14. What can I do besides taking meds to help my condition/symptoms not progress? Such, as avoidance of triggers like certain foods, heat, stress, fatigue, etc.
15. Should I always carry a couple epi pens with me? I have heard that sometime people actually need more than one at a time. How in the world would they know to use a second one?!
16. In the event that I would get really ill and need to go to an ER,. can you write a suggestion protocol note for me on your letterhead describing that I might have this condition and what treatment they should consider using if it appears that I am having a masto attack? Sometimes ER docs or paramedics don't believe mast people and don't take us seriously otherwise.
17. If I don't appear to have masto or any mast cell disease, what could I have and are there other types of specialists that I should see?
18. What type of disease is masto? Is it a genetic mutation as I have heard and can it be inherited by my children?
19. In the event that I have a problem, can I contact you? If so, do I do this by email, telephone, etc? I am thinking in the event that my local doctor cannot handle my immediate problem...let's say I get sick and am put on antibiotic that triggers my masto. My doctor may have no idea what antibiotic to substitute. Or maybe my symptoms get worse and I feel that I need a medicine adjustment.

(For a description of my consultation with a researcher, check out my post in the Mast Cell Doctor category.)

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Feel well!
Deborah 15 September 2008 08:45 AM