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Mast Cell Activation
Is there anyone that has MCA?,I live in Duluth and have just begun all types of testing for this nightmare (I.e. Blood test and bone marrow and 24hr Urinalysis)and they always come back negative in the since of trying to diagnose but I have been dealing with this since last year but didn't know what the heck was going on in my body.It started with just a skin rash at first but since last year till now I have developed allergies to foods I never had and now my body is so sensitive to heat change because within seconds my feet start tingling then swelling starts then my hands start swelling and the full breakout begins (niacin flush type feeling begins and doesn't stop)little scab like rash (like what fibromyalgia patients get)then the felling of vomiting begins.So I am so frustrated because all test keep coming back negative to get "DIAGNOSED"for MAST CELL to see how to treat it,even though I know that it is even the Oncologists and Allergist believes it is MCA so having to be my own advocate and research I have begun the "Low Histamine Paleo Food Change" But trying to cope day to day and for the most part living in my bedroom because I don't want to freeze out my wife or just feeling like my life is being robbed and my personality and to make things worse Dr.Afrin is booked out till 2018 and someone told me here in Duluth that is who you must see,so there goes that idea.I just sometimes want to give up because sometimes this Mast Cell makes you feel like you are loosing your mind.And I have no one to talk to that can relate to this,so there is my ramblings is there anyone who I can talk to that has this "CRAP".
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I pray you get the proper medical care very soon🙏🏻 hang in there!
Hi, good morning all. I have MCAS , post long Covid or vaccine injury... regardless I have it. It's really troubling me right now. My nose is a faucet, my body hurts, my stomach hurts - I feel like I have a flu. So, what to do...I came here for support, offer support, info, Intel lol.
I am receiving IVIG monthly treatments and that was really helping and felt like it went away for a while, but I am as of late feeling like I have had long Covid for the 3rd time and big MCAS. I do have epinephrine shots, but all they do is open my chest, dry my nose, make me sleepy lol. Crazy writing about it. I don't know how I get by, good sense of humor 😜 I guess. Nothing really has worked well for me and I am just so sick and tired of spending my days in doctor's offices. I had to go to my primary, urgent care, ER, dermatologist before finally getting diagnosed with onset of a strange eczema that developed into infected impetigo. Ughh, I just want to put my head in my pillow and scream and cry. Because, just seems ridiculous sometimes. And to all of those Dr's previous to the dermatologist who put me on Doxycycline, I explained that I have discitis with gas in my spine from all my new 4 autoimmune diseases, inflammation. I've already had an infection and almost died etc...crickets, gaslighting. sorry, not very supportive today. Honestly, I'm exhausted and moving and will be living alone so I can be sick and do me.
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2 Reactions@rcl50, I suggest you contact Mayo Clinic, Rochester appointments to ask about availability of appointments. See contact info here: http://mayocl.in/1mtmR63
How are you doing?
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2 ReactionsWhat is the name of the FB group?
My 23 yr old son has systemic Mastocytosis.
Are there doctors at Rochester Mayo who are taking new patients and treat mast cell activation?
Thx
Hi @samiblas, you may wish to contact Mayo Clinic Labs. Here is the contact information for patient inquiries: https://www.mayocliniclabs.com/customer-service/Contacts#Patient-Inquiries
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2 ReactionsApproximately how long does it take for Mayo clinic to process the 24hr urine test for MCAS including time to receive and send back to laboratory in NYC?
Hi @caw67. Welcome to Mayo Connect and thank you for the link to information for people with Mastocytosis and Mast Cell Disorders. It always helps to know you’re not alone in a diagnosis. That’s the goal of the Connect forum; To bring people together who share common medical conditions in an effort provide information, support and to offer hope.
Do you or a loved on have a Mast Cell disorder?
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1 ReactionThere is an incredible Facebook page for Mastocytosis and Mast Cell Disorders. Over 19,000 people in 2023. Loaded with info and TMS org links.
- low histamine diet
- antihistamines, leukotriene inhibitors
- avoid triggers
- find an immunologist/ allergist that specializes. Oncology/Hematology also. Relatively unknown, so find someone who listens and is experienced in MCAS.
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1 Reaction@danmlee, you'll notice that we removed your phone number and address. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.
I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.