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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 6 hours ago | Replies (7073)
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@pamelars60

Hi there. I have several , ( dare I say, weird ? ) diagnosis. I have Ehrlos-Danilo’s, Mast Cell Activation, Fibromyalgia, Dercums Disease. I have multiple allergies, kidney damage, due to Rhabdolyosis and several weird, or unusual health issues. I am looking for information regarding managing my MCAS. I do not have a specialist yet, who has experience in managing MCAS. I have seen several Hem/Onc docs, but none that have had patients with the MCAS, just mastocytosis patients. So I am trying to ‘wing it’, and looking for support and information. Thanks

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Replies to "Hi there. I have several , ( dare I say, weird ? ) diagnosis. I have..."
John, Volunteer Mentor | @johnbishop | Mar 25, 2018

Hello @pamelars60 -- welcome to Connect. Thank you for posting and sharing here on Mayo Connect. It's a great place to ask questions and learn what others with similar health problems are doing for treatments. There is a Mast Cell Activation discussion here on Connect that you find helpful to read through: Here is a link to the discussion:

-- https://connect.mayoclinic.org/discussion/mast-cell-activation/bookmark/?ajax_hook=action&_wpnonce=008121fd0c

Here is some detailed information on Mast Cell Activation Disorder: http://bit.ly/2jkDjWH; and if you would like to read about Mayo Clinic’s approach, please click on this link: http://mayocl.in/2jtjyyB

In the meantime, I would like to introduce you to @kanaazpereira, @dolan, @mjgarr, @denisefeddersen, @mepslissy, @jools, who have all talked about MCAs and/or mastocytosis, and I hope they will return with some advice.

Since MCAS is often found in patients with Ehlers–Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS), I wonder if one of our mentors, @kariulrich would have any insight?

John

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