:Masto

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Hi ,

Masto is a very hard thing to diagnose........... a lot of Drs are not really up on the info about it and think it is sooooooo rare that they will never see a patient with it, a self-fulfilling prophecy! I, early on, thought might have masto because of her symptoms and I did a lot of research about it and joined an e-group which is part of the Mastocytosis Society to try to get more current info. Here's some of what I know. There are two forms of masto, one is cutaneous (skin related) in this form sufferers ALWAYS have UP (urticaria pigmentosa) which is a very specific kind of urticaria spotting which does not appear and disappear........ The spots can be more brilliant or less, pinkish to reddish brown they aggravate when rubbed. The second form is sysemtic masto, in other words mast cells increasing in number, causing hiving. Run of the mill hivers, both chronic and acute have mast cell activation (not more mast cells, just "squirrelly mast cells). Masto sufferers experience hives which are most usually associated with one or more of the physical urticarias (heat cold, exercise, delayed pressure, solar, dermograhia) and often shock. Many have hives associated with vasculitis. My daughter had three physical urticarias, heat, cold and exercise and shocked every time she hived. So you can see why I explored this as an option. The next most common symptom for people with masto is GI tract involvement, either acid reflux disease or irritable bowel syndrome. had neither so that set her apart from other masto patients. The next most common symptom is joint pain and swelling. There are many more symptoms, if any one of these rings a bell........... just ask more and I will list some more symptoms.

Here are a few tests that various experts use to try to diagnose masto. All have their downsides.............. probably the best way to get a dx is to see a specialist very familiar with treating masto patients........ This means Dr at Vanderbilt Univ in TN.

Here are some of the tests: A 24 hr METHYL-histamine test, this is a urine test, the patient shouldn't be on anti-histamines and the test has to be a "METHYL" histamine test. A bone marrow biopsy, where three plugs are removed and analyzed for their mast cell load. And finally there is an experimental test being conducted out of the Univ of VA, measuring mast cell degranulation by product. This test can be done by sending blood to their lab, from anywhere in the US. I can send you the info on this if you want it. If you have any other questions, let me know. Hugs, Myra and Thank you for your prayers for .