1. < Blood Cancers & Disorders

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.

pamandrewsrn | @pamandrewsrn | Oct 24, 2020
In reply to @smbryce1 "I’m sorry to see no one has replied to you since 2017 (edit: after I posted..." + (show)
@smbryce1

I’m sorry to see no one has replied to you since 2017 (edit: after I posted this it showed me lots of replies). I joined just to make sure you have since found resources. If not I recommend you look into the support website called insight and look under mast cell activation you will find several groups an one is the mastocytosis society who is also found at tmsforacure.org and also check out mastattack.com which is a searchable blog written by a scientist who turns out to be a mast cell patient.

Ps I was a mayo patient but after they told me I had a mast cell activation disorder they only were able to help me somewhat so I have since gone elsewhere and recieved more treatment and have a much better quality of life now.

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Where have you gone? My son who is 30 has just received a mast cell disorder diagnosis.

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1 reply
smbryce1 | @smbryce1 | Oct 24, 2020
In reply to @pamandrewsrn "Where have you gone? My son who is 30 has just received a mast cell disorder..." + (show)
@pamandrewsrn

Where have you gone? My son who is 30 has just received a mast cell disorder diagnosis.

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I’m not on this website much anymore since I don’t go to Mayo Clinic anymore. And I moved back home to California

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1 reply
smbryce1 | @smbryce1 | Oct 24, 2020
In reply to @smbryce1 "I’m not on this website much anymore since I don’t go to Mayo Clinic anymore. And..." + (show)
@smbryce1

I’m not on this website much anymore since I don’t go to Mayo Clinic anymore. And I moved back home to California

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I’m sorry to see this about your son. There is a Facebook group for men with mast cell disorders. I’m curious did he have corona virus? A lot of people seem to start having mast cell symptoms after corona virus

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 24, 2020
In reply to @slarson18 "Thanks for sharing your story. I was diagnosed with Cutaneous Mastocytosis 5 years ago. I have..." + (show)
@slarson18

Thanks for sharing your story. I was diagnosed with Cutaneous Mastocytosis 5 years ago. I have so many symptoms of systemic such as headaches, chest pains, flushing, abdominal pain, allergies to hot and cold, etc. They have yet to diagnose it as systemic because most doctors I see don't know what tests to run. I tried getting into Mayo so that they can run tests and diagnose me but internal medicine rejected me. How did you get into Mayo for them to run tests and get a diagnosis? Always a frustration with this disease when so many know so little about it, so hoping Mayo will reconsider my request since they seem to be the only ones who know at least some information on how to treat the symptoms of this disease. Any advice is helpful.

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Hello @slarson18, I would like to add my welcome to Connect along with @pamandrewsrn and @smbryce1. @smbryce1 shared some good resources for information on mast cell activation. Here are the links in case you missed them.

- The Mast Cell Disease Society: https://tmsforacure.org/
- Mast Attack - Educating people about life with mast cell disorders: https://www.mastattack.org/

Treatments from first website above - https://tmsforacure.org/treatments-2/

You mentioned trying to get an appointment at Mayo Clinic through internal medicine but it was rejected. Have you tried going directly to the website for the condition and clicking the Request an Appointment button or asking your doctor for a referral?

- Systemic mastocytosis care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/care-at-mayo-clinic/mac-20352862

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nla4625 | @nla4625 | Dec 28, 2020

MAST symptoms -Shortness breath, air hunger, difficulty deep breathing

@yaramarthe gave us all an incredible Christmas gift by posting this article about MAST cell activation syndrome: https://hoffmancentre.com/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/. MAST cells are white cells present throughout our bodies that have to do with the immune system. When they are triggered and run wild, they cause all sorts of problems at every level -- heart, respiratory, circulatory, etc. The article actually lists symptoms by each system in the body. At various stages of our lives, different MAST cells can go off the rails and cause different odd symptoms and illnesses not picked up in routine blood tests. I've been reading a lot about MAST cells this weekend and believe this --and the type of medicine being practiced at this clinic whose term I can't recall --perhaps frontal? -- are 2 doors to answers a lot of us have been looking for. Whatever the name for the type of medicine this is, ie frontal, it is a systems approach looking for underlying root causes of medical issues. The inflammation et all caused by MAST cells run amok is definitely a root cause. Mayo Connect and the Mayo Clinic web site have information about MAST cell diseases; but on a brief reading it seemed they dealt with more specific rare diseases. At this stage of my learning, I need broad brush strokes. THE best site I found was by a scientist called Lisa. I think it was called askmast.com. I'm afraid if I close this to look it up, I'll lose the whole thing...but you can find it. I was thrilled to learn that Cleveland Clinic is practicing this frontal? medicine...they are in my neighborhood. Thank you yaramarthe and Mayo Connect for getting this information to us. Best wishes for a happy, safe, and healthy new year to everyone. Nancy

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1 reply
Erika | @erikas | Dec 28, 2020
In reply to @nla4625 "MAST symptoms -Shortness breath, air hunger, difficulty deep breathing @yaramarthe gave us all an incredible Christmas..." + (show)
@nla4625

MAST symptoms -Shortness breath, air hunger, difficulty deep breathing

@yaramarthe gave us all an incredible Christmas gift by posting this article about MAST cell activation syndrome: https://hoffmancentre.com/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/. MAST cells are white cells present throughout our bodies that have to do with the immune system. When they are triggered and run wild, they cause all sorts of problems at every level -- heart, respiratory, circulatory, etc. The article actually lists symptoms by each system in the body. At various stages of our lives, different MAST cells can go off the rails and cause different odd symptoms and illnesses not picked up in routine blood tests. I've been reading a lot about MAST cells this weekend and believe this --and the type of medicine being practiced at this clinic whose term I can't recall --perhaps frontal? -- are 2 doors to answers a lot of us have been looking for. Whatever the name for the type of medicine this is, ie frontal, it is a systems approach looking for underlying root causes of medical issues. The inflammation et all caused by MAST cells run amok is definitely a root cause. Mayo Connect and the Mayo Clinic web site have information about MAST cell diseases; but on a brief reading it seemed they dealt with more specific rare diseases. At this stage of my learning, I need broad brush strokes. THE best site I found was by a scientist called Lisa. I think it was called askmast.com. I'm afraid if I close this to look it up, I'll lose the whole thing...but you can find it. I was thrilled to learn that Cleveland Clinic is practicing this frontal? medicine...they are in my neighborhood. Thank you yaramarthe and Mayo Connect for getting this information to us. Best wishes for a happy, safe, and healthy new year to everyone. Nancy

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@nla4625 You are excited to pass on an article related to MAST symptoms.

You will see that I have moved your question into a discussion where members are currently discussing MAST. I did this so you could more quickly connect with members like @pamandrewsrn @smbryce1 @slarson18 @megansims @huronshores who have experience with this topic and may be a good resource for you. I also encourage you to scroll back through the previous comments.

Below I have linked a another previous discussion about MAST that you may find interesting.
- Mast Cell Disease vs Carcinoid https://connect.mayoclinic.org/discussion/mast-cell-disease-vs-carcinoid/

May I ask if you have been diagnosed with MAST cell activation syndrome formally?

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1 reply
nla4625 | @nla4625 | Dec 28, 2020
In reply to @erikas "@nla4625 You are excited to pass on an article related to MAST symptoms. You will see..." + (show)
@erikas

@nla4625 You are excited to pass on an article related to MAST symptoms.

You will see that I have moved your question into a discussion where members are currently discussing MAST. I did this so you could more quickly connect with members like @pamandrewsrn @smbryce1 @slarson18 @megansims @huronshores who have experience with this topic and may be a good resource for you. I also encourage you to scroll back through the previous comments.

Below I have linked a another previous discussion about MAST that you may find interesting.
- Mast Cell Disease vs Carcinoid https://connect.mayoclinic.org/discussion/mast-cell-disease-vs-carcinoid/

May I ask if you have been diagnosed with MAST cell activation syndrome formally?

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Thanks for your reply. I hope my post will remain in the lung discussion group, which I joined when I learned I have a paralyzed left diaphragm. As far as I know, I'm not dealing with any MAST issues now, although their malfunctioning might well have caused many medical issues I've had to cope with in the past...such as chronic fatigue, depression, obesity, abnormal noncancerous growths resulting in 3 operations in 3 years to remove them (thyroid, uterus, acoustic neuroma), and so on. I wondered at the time what on earth was happening in my body to cause abnormal growths in 3 totally different systems. I've been reading post after post on the lung discussion group from people experiencing scary problems like shortness of breath, inability to take a deep breath, yawning, etc. who are seeking answers as to why this is happening to them and not finding them from their doctors or medical tests. The article referenced listed these symptoms being caused by malfunctioning MAST cells in the respiratory system, which is why I wrote a post about it on the lung discussion site. Andrew Weil believes inflammation is a root cause of many chronic and other illnesses, and I'm gaining a better understanding of that from the reading I'm doing on problems caused by MAST cells running amok. I'll definitely check out the things you mentioned. Thanks again. Nancy

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Ruthie | @bluecow | Sep 19, 2021
In reply to @kanaazpereira "Hello @lookingforanswers2017, Welcome to Connect. I can only imagine your worries, and want to reassure you..." + (show)
@kanaazpereira

Hello @lookingforanswers2017,

Welcome to Connect. I can only imagine your worries, and want to reassure you that you are not alone. We're so glad that you've reached out to the Connect community for support. I'm certain that @danmlee @dolan @mjgarr @mepslissy @jools @allergynightmare @jbhmaine @lean1 will return to share their insights with you.

I'd also like to mention that Mayo Clinic physicians have a special interest in the diagnosis and treatment of systemic mastocytosis — mast cell activation syndrome. As part of their research, they have discovered several new syndromes and identified how mast cells and eosinophils play a role in a variety of diseases. You can read more about the program here: http://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/systemic-mastocytosis-care-at-mayo-clinic/ovc-20324430

Research studies have shown that many skin disorders worsen during stress and are associated with increased numbers and activation of mast cells. Here's an article that reports on depression in patients with mastocytosis: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0026375

@lookingforanswers2017, has your doctor recommended any stress relieving approaches, for example meditation? Have you found it beneficial to change your diet?

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MCAS is not the same as the more rare mastocytosis, they are 2 different things per Dr. Afrin, Dr. Dempsey, and Dr. Maitland. The sad thing is that specialists in this mis-understood disease (MCAS) are only concierge doctors and do not take insurance, so treatment is only for the rich? When will Mayo recognize Mast Cell Activation Disease as separate than mastocytosis? MCAS is extremely disabling for many of us, with comorbid conditions like POTs and Ehlers-Danlos.

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andy1104 | @andy1104 | Sep 29, 2021

About Beth – Mast Cell 360, LLC...I LIKE HER WEBSITE BECAUSE SHE HAS WALKED THE WALK...VERY INFORMATIVE

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carlc | @carlc | Aug 8, 2022
In reply to @kanaazpereira "Hello @jbhmaine, Welcome to Connect; thank you so much for sharing your history...you've been through so..." + (show)
@kanaazpereira

Hello @jbhmaine,

Welcome to Connect; thank you so much for sharing your history...you've been through so much!

Mayo Clinic allergy and collaborating physicians are leaders in mast cell and eosinophil-associated disease research. As part of their research, they have discovered several new syndromes and identified how mast cells and eosinophils play a role in a variety of diseases. You can read about the program by clicking on this link: http://mayocl.in/2pxmbz5

@danmlee @allergynightmare do you have any more insight that might help @jbhmaine?

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Hi Kanaaz,
I just joined the Mayo Clinic group discussions, as I have been diagnosed with Lymphocytic Variant Hypereosinophilic Syndrome. In your post from May 9, 2017 you posted a link that contained Mayo Clinic researchers findings about eosinophils. When I went to that page on the website, it said "Page not Found".
I would like to see the correct link (if you know where it is).
I'm also interested in seeing Mayo Clinic doctors that are knowledgeable about my diagnosis.
Thanks,
Carl

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