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".

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Colleen Young, Connect Director | @colleenyoung | Sep 6, 2022

In reply to @carlc "Hi Kanaaz, I just joined the Mayo Clinic group discussions, as I have been diagnosed with..." + (show)

Hi Carl,
I have corrected the link in Kanaaz's post. I believe she is referring to this research at Mayo Clinic
- Mayo Clinic Program for the Study of Mast Cell and Eosinophil Disorders Cell and Serum Bank https://www.mayo.edu/research/clinical-trials/cls-20315009

Here's additional information:
- Hypereosinophilic syndrome https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/symptoms-causes/syc-20352854

If you would like to consult with Mayo experts, you can submit an appointment request here: http://mayocl.in/1mtmR63

danmlee | @danmlee | Mar 25, 2023

I was also diagnosed with Mast Cell also and I did bone marro test and every test under the son always came back negative I was so FN tired of it all did antihistamine diets I was even in Duluth news tribune about it but finally I went to Mayo and I was told it was Central Sensitization "Google it" but partly bad Fibro and I had those scabs but the reason all tests came back negative for Mast Cell because it wasn't and I'm only speaking for myself but if you can ask who ever you are seeing ask them could there be a chance it could be CS, so I live in Duluth as well if you are able and need to talk let me know.

John, Volunteer Mentor | @johnbishop | Mar 25, 2023

In reply to @danmlee "I was also diagnosed with Mast Cell also and I did bone marro test and every..." + (show)

@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.

caw67 | @caw67 | Oct 7, 2023

There 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.

Lori, Volunteer Mentor | @loribmt | Oct 7, 2023

In reply to @caw67 "There is an incredible Facebook page for Mastocytosis and Mast Cell Disorders. Over 19,000 people in..." + (show)

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?

samiblas | @samiblas | Nov 21, 2023

Approximately 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?

Colleen Young, Connect Director | @colleenyoung | Nov 25, 2023

In reply to @samiblas "Approximately how long does it take for Mayo clinic to process the 24hr urine test for..." + (show)

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

rcl50 | @rcl50 | May 16 5:01pm

Are there doctors at Rochester Mayo who are taking new patients and treat mast cell activation?
Thx

christyann715 | @christyann715 | May 17 9:07am

In reply to @loribmt "Hi @caw67. Welcome to Mayo Connect and thank you for the link to information for people..." + (show)

What is the name of the FB group?
My 23 yr old son has systemic Mastocytosis.

Colleen Young, Connect Director | @colleenyoung | May 23 5:26pm

In reply to @rcl50 "Are there doctors at Rochester Mayo who are taking new patients and treat mast cell activation?..." + (show)

@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?

View More View Less

Please sign in or register to post a reply.