How does someone get diagnosed with Mast Cell disorder? Since June my WBC count has been at 3.1, usually it is 8.7. My PCP thinks it was from a virus, so we are just checking it every month. (Although I never had a virus to my knowledge) So far it has been no higher than 3.4. How long should i wait for it to get back into normal range before getting it checked out further? And who would be the right type of doctor to look into it?
I have EDS, Dysautonomia, CSF leak, possible diabetes Insipidus .
Hi inafog, I’ve done a 360 when it comes to mast cell activation syndrome. “True” mastocytosis should be ruled out (serum tryptase test is best), but it is a rare one of us who actually has mastocytosis. Basically, if you feel better after Zyrtec/Zantac combo (hitting 2 different histamine receptors — we went to double doses of both meds in our home for a while), and you don’t have true mastocytosis, you are said to have MCAS. If that is all there is to it, you don’t need to go to a specialist for antihistamines! Now, your CSF leak! Let’s talk!! 😉 Is it out your nose, ears, or is it spinal? BIG difference in what we do there, and it tells us something about what’s going on, too! Oh, your WBC’s — that CAN jump around a fair amount and it’s just not possible to say how long it may be high or low, but it may be important to know which WBC’s are high. Basophils? Lymphocytes? Eos? etc. I don’t know where you live, but we’ll be running treatment trials for dysautonomia (especially focused on the G.I. symptoms) soon! Info is here: http://prettyill.com/resources/view/gastroparesis_and_ibs_treatment_trial_sign_up_begins
Tell your friends! 😉 Hang in, my friend…