Mast Cell

[Darlene]

i know i have made several posts about mast cell. sorry i keep talking about it so much. i do believe my symtpoms match it closely. i do not have the money to drive to mayo or vanderbilt. i had a positive ANA, and my neurologist is sending me to a rheaumatologist. whats tests can i ask him to do to help determine if i could have mast cell. i m not talking about the test that can come back negative and u can still have mast cell, but reliable tests. thank you!

[juliegee]

Ah, If such an animal existed- a RELIABLE test- it'd make it much easier for all of us . Darlene, the obvious starting place is to have a serum tryptase blood test- that will rule out mastocytosis. (Mastocytosis and MCAD have the same symptoms and treatment.) Once you've ruled that out, a thorough history is very important. Mast cell diseases can affect EVERY body system. Doctors look for a unique constellation of symptoms. Common ones include: interstitial cystitis (or repeated inexplicable bladder infections w/ normal tests), IBS usually with "D", migraines, hives, allergy/asthma symptoms (often with NO allergies), dermatographism, cognitive deficits, autonomic symptoms- fast HR, blood pressure abnormalities, etc. (For a complete list: http://tmsforac.ipower.com/dev/archives/179) Docs pay attention to HOW you respond with and without an H-1 and H-2. My doctor ordered a 24 hour urine test to check for prostaglandin D-2 and methylhistamine. Docs are now doing blood work to screen for other chemical mediators that are released when mast cells degranulate, like high levels of heparin. Mast cell activation disorder (MCAD) or syndrome (MCAS) remains a little understood phenomenon. The best specialists to see are Dr. Marianna Castells in Boston or Dr. Lawrence Afrin in Charleston. Diagnostic criteria is evolving. If you have to stay with a local allergist, my best advice is to print information form the internet and act as your own advocate.