I would love to hear from anyone out there who has experience with or knowledge of Mast Cell Activation Synd/Disease.
My EM symptoms are on the mild/moderate side and are apparently much less painful than for many of you, which I understand may be the case when EM is related to MCAS/MCAD. I also get itchy skin and a random hive now and then despite changes of diet, negative allergy tests, changes of hygiene and laundry products, etc. The strange kicker is that Benadryl completely erased my toe flaring when I first tried it, although the second day I took it the flaring was back somewhat (patchy) and the third day, it had no effect and I flared that night like usual.
I plan to ask my doctor about this (when I get in to see one - looking for a new doc as I type due to newly acquired health insurance), but in the meantime I would love to hear any of your wisdom on and experience with the subject.
Also, if anyone knows of a good doc in the Twin Cities, do tell! Obviously I know about Mayo, but my insurance conveniently excludes the Clinic due to their high costs. What a drag to be so close and unable to go.
I see Amanda Steele. She’s a rheumatologist at park Nicollet in Saint Louis park. She was the one who diagnosed me with EM and ruled out lupus and other disorders. I like her a lot because she’s very thorough and she’s had experience with EM patients. as far as mast cell disorder, I don’t know much But I would definitely see Amanda Steele.
Stella, I can't thank you enough for letting me know about Dr. Steele. I have made an appointment with her for early Feb. Suddenly having health coverage again after a long lapse has made me feel somewhat overwhelmed by the situation of starting at square one again trying to find a doc. BIG thanks to you!
XxStellaxX said:
I see Amanda Steele. She's a rheumatologist at park Nicollet in Saint Louis park. She was the one who diagnosed me with EM and ruled out lupus and other disorders. I like her a lot because she's very thorough and she's had experience with EM patients. as far as mast cell disorder, I don't know much :( But I would definitely see Amanda Steele.
Libby, I just heard about Mast Cell syndrome and googled it with EM. This post came up. I also have low-pain EM and wondered if you found out if there is a correlation between the two.
The second one describes a link with Small Fiber Neuropathy and Mast Cell Activation Syndrome, hence EM. There is also a link with it and Hyperadrenergic POTS and Orthostatic Hypotension. Be advised that some people experience similar symptoms and they have normal mast cells, it may be caused by autoimmunity or other white blood cell disorder.
I'm also in the process of discussing it with my doctor whom I surprise every appointment haha. I'm getting similar symptoms.
But I would definitely see Amanda Steele.