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”.

I'm from Duluth MN as well. Saw your news tribune article as well. But like you have been struggling with this for years now. I was dealing with an undiagnosed chronic sore throat-cough and moderate digestive issues for a few years prior that I never got checked out….at the time it was a very annoying nuisance, I was somewhat miserable, but at least I could function decently enough. It wasn't until after I took something. Just like your cortisone shot, there was a trigger for me. two supplements together, niacin and chromium….took them in the morning, and immediately felt a odd cooling sensation of what felt like water, up my neck, and then down my left arm. Didn't think anything of it at the time. But then like 12 or so hours later, I had the worst psychological feeling I've ever had in my life, just like a sinking death, impending doom, oh my god something is wrong type feeling. Then A few hours after that, wow did things go to absolute hell. Shortness of breath, alternating massive burning sensations and whole body going completely numb, i Couldn't even sleep for the first 2 days or so. Every time I tried and started dosing off, I would get jarred back awake by my body. I thought it was the end. And well, 4 years later kind of wish it was actually considering the life it's given me or lack thereof. Been to emergency room twice since initial onset. Just React to absolutely everything now. There's a mine field of triggers that are just impossible to avoid. And the kicker is that medications-supplements-herbs are one of the worst triggers. How can I get better if I can't tolerate something that's meant to heal me.? I realized less is more when it comes to quality of life…..but it just hasn't been nearly enough. It seems the only way would be to live in a completely sterile bubble in which I wouldn't have to eat or drink anything. And that's obviously not very plausible. Not a lot of hope left. Anyway, I don't know if you'll see this a year or so later. But have you found anybody else in the Duluth area who's dealing with this? And have you been able to improve your health?

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@kedening

Hello All, I am doing research to find a clinic that will accept patients without a bone marrow biopsy. My allergist and I tried the Brigham Hospital in MA, but they were super unhelpful in the process of getting in. Even the staff wouldn't talk with my doc! Its such a frustrating process to get in where there is experienced people who really can speak on this disorder. Does anyone have suggestions of places they have tried or tactics in speaking with specialized places? What does Mayo offer in terms of this?

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@kedening I am not clear on why they would not help you, are you opposed to a bone marrow biopsy? I am a transplant patient so I know nothing about "mast cell activation", but if you feel there is no need for that biopsy perhaps another hospital would be more accepting of a patient who has not done that. My hospital of choice is Mass General (I presume you are in the New England area). They have been wonderful and at this point I have been to many doctors there rather than the doctors in my own area because I don't find them to be helpful or as knowledgeable.
JK

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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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@antessa

I read that if the urine and blood tests are not put on ice immediately they will come back normal… hope this helps

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This is true for certain tests needed for mast cell disease diagnosis. And mayo also says the same urine tests can be done without refrigeration if properly preserved with a certain chemical in the urine collection jugs

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@kanaazpereira

Welcome to Connect, @antessa. Thanks for sharing the insight; I’m sure @defeatedsteph will appreciate the information. May i ask what brings you to Connect?

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I would definitely take that to your doctor asking what it means. Also with your medical history as listed I would look into hereditary alpha Tryptasemia testing. It’s new and thus currently only available out of pocket, but any doctor can order it and I beleive it’s around $160 out of pocket. It’s a new genetic test for a disorder they recently named and it includes a cluster of disorders such as Eds, pots and mast cell disorder or severe allergic reactions

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@patrick6726

I'm from Duluth MN as well. Saw your news tribune article as well. But like you have been struggling with this for years now. I was dealing with an undiagnosed chronic sore throat-cough and moderate digestive issues for a few years prior that I never got checked out….at the time it was a very annoying nuisance, I was somewhat miserable, but at least I could function decently enough. It wasn't until after I took something. Just like your cortisone shot, there was a trigger for me. two supplements together, niacin and chromium….took them in the morning, and immediately felt a odd cooling sensation of what felt like water, up my neck, and then down my left arm. Didn't think anything of it at the time. But then like 12 or so hours later, I had the worst psychological feeling I've ever had in my life, just like a sinking death, impending doom, oh my god something is wrong type feeling. Then A few hours after that, wow did things go to absolute hell. Shortness of breath, alternating massive burning sensations and whole body going completely numb, i Couldn't even sleep for the first 2 days or so. Every time I tried and started dosing off, I would get jarred back awake by my body. I thought it was the end. And well, 4 years later kind of wish it was actually considering the life it's given me or lack thereof. Been to emergency room twice since initial onset. Just React to absolutely everything now. There's a mine field of triggers that are just impossible to avoid. And the kicker is that medications-supplements-herbs are one of the worst triggers. How can I get better if I can't tolerate something that's meant to heal me.? I realized less is more when it comes to quality of life…..but it just hasn't been nearly enough. It seems the only way would be to live in a completely sterile bubble in which I wouldn't have to eat or drink anything. And that's obviously not very plausible. Not a lot of hope left. Anyway, I don't know if you'll see this a year or so later. But have you found anybody else in the Duluth area who's dealing with this? And have you been able to improve your health?

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You might find more help by checking into the mast cell disorder groups and discussions on the insight webpage. Or ask the mastocytosis society at tmsforacure.org

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@kedening

Hello All, I am doing research to find a clinic that will accept patients without a bone marrow biopsy. My allergist and I tried the Brigham Hospital in MA, but they were super unhelpful in the process of getting in. Even the staff wouldn't talk with my doc! Its such a frustrating process to get in where there is experienced people who really can speak on this disorder. Does anyone have suggestions of places they have tried or tactics in speaking with specialized places? What does Mayo offer in terms of this?

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Unfortunately a lot of the specialists are being overwhelmed by patients who think they have mast cell disorder, many of whom may. This is part of what is making them set strict and often seemingly unreasonable limitations. Have you checked out Facebook groups for mast cell activation many patients are willing to message each other there or on insight with recommendations what to do next. Doctor Afrin switched to conscierge so he’s only out of pocket and thus out of the price range of many. Mayo does have a mast cell clinic but getting in can be tricky and they currently seem to be focused primarily on mastocytosis

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Hello @smbryce1,

I sincerely appreciate your follow-up of posts in the Mast Cell Activation group on Connect – welcome!
You mentioned, "…after I posted this it showed me lots of replies," and as moderator of this group (Skin Health), I thought I'd also clarify that it's an active conversation, especially with the shared experiences and valuable responses offered by other Connect members in this discussion. I also hope that @danmlee has found good resources and some relief for coping with MCA.

The benefit of sharing in the community is that you can receive information and support from a knowledgeable group of people; it is awesome that you have chosen to be a participating member of the Connect community; would you be comfortable in sharing more about your treatment and what has helped you led a better quality of life?

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@patrick6726

I'm from Duluth MN as well. Saw your news tribune article as well. But like you have been struggling with this for years now. I was dealing with an undiagnosed chronic sore throat-cough and moderate digestive issues for a few years prior that I never got checked out….at the time it was a very annoying nuisance, I was somewhat miserable, but at least I could function decently enough. It wasn't until after I took something. Just like your cortisone shot, there was a trigger for me. two supplements together, niacin and chromium….took them in the morning, and immediately felt a odd cooling sensation of what felt like water, up my neck, and then down my left arm. Didn't think anything of it at the time. But then like 12 or so hours later, I had the worst psychological feeling I've ever had in my life, just like a sinking death, impending doom, oh my god something is wrong type feeling. Then A few hours after that, wow did things go to absolute hell. Shortness of breath, alternating massive burning sensations and whole body going completely numb, i Couldn't even sleep for the first 2 days or so. Every time I tried and started dosing off, I would get jarred back awake by my body. I thought it was the end. And well, 4 years later kind of wish it was actually considering the life it's given me or lack thereof. Been to emergency room twice since initial onset. Just React to absolutely everything now. There's a mine field of triggers that are just impossible to avoid. And the kicker is that medications-supplements-herbs are one of the worst triggers. How can I get better if I can't tolerate something that's meant to heal me.? I realized less is more when it comes to quality of life…..but it just hasn't been nearly enough. It seems the only way would be to live in a completely sterile bubble in which I wouldn't have to eat or drink anything. And that's obviously not very plausible. Not a lot of hope left. Anyway, I don't know if you'll see this a year or so later. But have you found anybody else in the Duluth area who's dealing with this? And have you been able to improve your health?

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Hi Patrick – I am from Duluth! I have been having symptoms of mast cell disease, like anaphylactic reaction, what I thought were food allergies, digestive problems, weakness, fatigue, heat rashes/sensitivity, body rashes, etc. for years with no answers as to why.
After I had my last episode, I went into my PCP and thought I needed to get allergy testing done. I was referred to Dr. Alaaddin Kandeel in the Essentia Health allergy department. After I explained my symptoms and different reactions, Dr. Kandeel told me about Mast Cell Disease. He took his time to explain the disease to me. It was the first appointment I’ve had where I felt the doctor really listened to what I had to say and answer every question I had. He did not make me feel rushed at all. He had blood tests done for me that day. He then had me do the 24 hour urine test, and I am scheduled for a bone marrow biopsy. I highly recommend Dr. Kandeel at Essentia Health. Take care!

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Finally someone that understands my plight. Yes, this disease is a nightmare and when I have an attack, my face almost gets disfigured due to extreme swelling and allergy type breakout. This in top of extreme itch that makes me want to use a knife and peel my skin off. One of my doctors states there is now a vaccination for mast cell, with conditions. First off you must have experienced this under Dr care for at l ast one year before being considered for the vaccine. He stated currently it is basically out of financial reach for those who need it (such as me) because it’s over four thousand a month, one vaccine and must be continued for around ten-twelve months in order to become effective. I failed to write down the name as he cost was enough to know I’ll never be getting it. Oh, and insurance as I am on Medicare, won’t pay any portion. This may change in the future however I shall not see this in my lifetime more than sure.

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@jennybay

Finally someone that understands my plight. Yes, this disease is a nightmare and when I have an attack, my face almost gets disfigured due to extreme swelling and allergy type breakout. This in top of extreme itch that makes me want to use a knife and peel my skin off. One of my doctors states there is now a vaccination for mast cell, with conditions. First off you must have experienced this under Dr care for at l ast one year before being considered for the vaccine. He stated currently it is basically out of financial reach for those who need it (such as me) because it’s over four thousand a month, one vaccine and must be continued for around ten-twelve months in order to become effective. I failed to write down the name as he cost was enough to know I’ll never be getting it. Oh, and insurance as I am on Medicare, won’t pay any portion. This may change in the future however I shall not see this in my lifetime more than sure.

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@jennybay that is really horrible that there is something that could probably help you but is beyond reach, financially. Maybe they won’t pay because it’s effectiveness is not yet proven. If so maybe it will eventually be covered.
The pharma companies are so greedy. Young people who want to make large incomes typically gravitate toward pharma, knowing the opportunity for big bucks is there. A young woman we know works in that field and is easily a millionaire at this point, with many perks.
JK

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@jennybay

Finally someone that understands my plight. Yes, this disease is a nightmare and when I have an attack, my face almost gets disfigured due to extreme swelling and allergy type breakout. This in top of extreme itch that makes me want to use a knife and peel my skin off. One of my doctors states there is now a vaccination for mast cell, with conditions. First off you must have experienced this under Dr care for at l ast one year before being considered for the vaccine. He stated currently it is basically out of financial reach for those who need it (such as me) because it’s over four thousand a month, one vaccine and must be continued for around ten-twelve months in order to become effective. I failed to write down the name as he cost was enough to know I’ll never be getting it. Oh, and insurance as I am on Medicare, won’t pay any portion. This may change in the future however I shall not see this in my lifetime more than sure.

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Ah, good to hear such kind and hopeful words. I need that hope as do many. Any and all information on MCD is much appreciated.

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