Hi Jeri,
Sounds like you've done a great job educating yourself! Sorry you're still having flares. You will probably be able to get those under control for the most part with meds, diet, and lifestyle changes.
Most of us do react to stress. Extra meds when you find yourself in a stressful situation is one part of feeling better. Also, you will recognize the "early warning symptoms" as time goes on and can add more antihistamines and other meds before it gets to a critical level. That's pretty much just awareness, which you'll develop.
And, no tomatoes or eggplant, even though it's summer! Sorry to say that your diet is probably playing a role in your symptoms. The sun might be, too. You might want to try the low histamine diet for 10 days (religiously!) and then try to add back one food every few days and see how you do. Believe me, as time goes on, it really feels much better not to have the digestive symptoms and anaphylaxis than it does to eat those foods. There are also additives that might cause a problem, and you'll have to ferret those out using an elimination plan.
Did your doctor who did the BMB tell you what type of mast cell disorder you have? If not, you probably want to ask if it's systemic mastocytosis or mast cell activation syndrome. If it's SM, they should be able to tell you if it's Indolent at this point, and you will want to know if they tested for gene mutations.
You do not have mast cell leukemia. MCL comes on very quickly, and you have had this too long. I don't think it's ASM either, but your doctor can confirm that. They would have had you on chemotherapy by now if that were the case, in my opinion and your tryptase would probably be over 200.
If you haven't been to
tmsforacure.org, there is a lot of info there, too, including a recent article by Valent, et al, that might help you narrow down what's going on.
Hope you feel better soon and can get yourself stable!
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Jeri's Masto story (Read 3283 times)
