Mast Cell Activation

Posted by danmlee @danmlee, Jan 17, 2017

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”.

Liked by dolan

Hi Pat @51irishlass, thanks for the private message. I thought I would answer it here so that when you receive the notification email you can click View & Reply and it will take you to the MCAS discussion where you can meet other members. You can follow as many discussions as you want by clicking the +Follow link at the top of a discussion below the description. When it changes to +Following, you know that you will be notified anytime there is a new post to the discussion.

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I'm so sorry to hear about everything your going through. Currently my daughter is being treated for MCAS by Dr. John Moore. He works out of the Twin Cities, Midwest ENT. He was so helpful trying to understand what was going on with my child. He seemed to be learning and knowing alot about MCAS. Maybe you can reach out and see him. Lots of luck!

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@sierras

I'm so sorry to hear about everything your going through. Currently my daughter is being treated for MCAS by Dr. John Moore. He works out of the Twin Cities, Midwest ENT. He was so helpful trying to understand what was going on with my child. He seemed to be learning and knowing alot about MCAS. Maybe you can reach out and see him. Lots of luck!

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How did your daughter get diagnosed. My doctor has officially diagnosed me with clinical MCAS but we haven’t been able to find proof of a mediator release even though we know something is happening because my service dog alerts to my reactions, I’m just trying to see how many people have had a similar problem of not being able to capture a mediator release

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