Mast Cell Activation Disorder And Screening

[jaddico]

For those of you who have had screening for Mast cell activitation disorder or have been diagnosed with it (MCAD); Who screened you for it?

1. Was it your neurologist /dysautomonia specialist o

2. An allergist (immunologist)

3. Other.

Thanks to all the wonderful information and resources from this forum, I'm now wondering if my neuropathy/dysasthesias (arms, thigh and legs the worst) and abnormal QSART test, excessive and unusually high nerve fibers from recent skin biopsy, as well as pregnancy/post-surgical induced POTS has anything to do with MCAD. I've been getting allergy shots for over 10 years. My allergest states that my skin testing was bad and I get 3 shots every 2 wks after my most recent test almost a year ago. I can barely tolerated my injections because my arm swell up and itches so bad ( they do "Epi-wash" before the injections to help minimize local reaction..doesn't help much). I'm allergic to shellfish and had horrible allergic reaction to MRI constrast almost a year ago. I will truly appreciate your feedback. My neurologist has referred me to Dr Chemali in Norfolk, VA and I have an appointment with him in September so I wanted to do some work before seeing him to figure out this madness that's affecting my body. Thank you very much

[Christy_D]

We took my son to Dr Afrin in South Carolina. He is an oncologist/hematologist. MCAS is one of his areas of 'interest' or expertise.

[Katybug]

I was dx'ed with classical allergies and mcas by an immunologist. I, too, struggle with my allergy shots but am finally on a maintenance dose after a year and a half of trying to get there. I am also now on Xolair shots, a biologic that suppresses IgE. But it's hard to find local immunologists that get it....mine is a bit of a maverick. But if you can make it there, Dr. Afrin is supposed to be the best and it sounds like you should see someone who really has a specialty in MCAS.