My Daily Life with Mast Cell Disease

I have had a few friends ask questions about my health recently. These questions were not specific technical questions indicating a familiarity with this illness but were very general questions about my illness indicating that some explanations and information might be useful to my family and friends. I felt the answer would be to post a link to a website as well as a link to a YouTube video, but unfortunately, I could not find any concise material to link so I decided to write about my personal experiences and struggles with my chronic illness here.

My chronic illness actually consists of two versions of Mast Cell Disease and multiple spinal injuries, exasperated with occasional bouts with cancer. A little more than ten years ago I developed Systemic Mastocytosis which involves numerous internal organs. A few years later I developed another version of this illness which involves the skin called Cutaneous Mastocytosis to add to my systemic illness.

Mast Cell Disease is classified as a myeloproliferative neoplasm which is a classification of diseases of the bone marrow in which excessive cells are produced.

In Systemic Mastocytosis, the patient has an excess of mast cells. These mast cells are also overactive with this illness. In a normal, healthy body, mast cells are key in the response to inflammation and/or allergy. In the Systemic Mastocytosis patient, these overactive mast cells simply “attack” the body for no known reason. In this respect, this illness is also classified as an autoimmune disease by many, but not all, for reasons irrelevant to this discussion.

When an overactive mast cell degranulates, it releases mediators such as histamine, serotonin, heparin, prostaglandin D2, tryptase and leukotriene C4. As an example (one of very many possibilities with this illness), imagine a large amount of mast cells responding to what they think is inflammation but is really just the patient's healthy liver, or spleen, or gastrointestinal tract, or any other part of the body. These mast cells have somehow become hyperactive and are now wreaking havoc on random organs in the body.

When large amounts of histamine are released into the body (through mast cell degranulation), this histamine dilates certain types of veins and increases blood vessel permeability which leads to swelling and the attraction of other inflammatory cells to the site. It also causes an irritation to nerve endings. This is the same type of reaction which causes anaphylaxis in the body's response to severe allergy. It must be pointed out, however, that Systemic Mastocytosis is not an allergy. Systemic Mastocytosis is a myeloproliferative disease and autoimmune disease. (There are simple tests to determine if allergy is causing mast cell issues. When discussing Mast Cell Disease, Systemic Mastocytosis, and Cutaneous Mastocytosis, allergy has already long been ruled out... along with many other illnesses.)

(Edit:  There often is heated debate today over whether or not this illness is an autoimmune disease. In my humble opinion, because these mast cells are 'responding to' otherwise healthy organs indiscriminately, this resembles an autoimmune disease in my mind... the body turning against itself.)

So, for no apparent or known reason, the patient suffers from anaphylaxis on a regular basis. (It should be pointed out that there are some known triggers for each patient but these triggers need not be present to trigger anaphylaxis and the cascading episodes.) Sometimes the patient will suffer from this type of reaction so often that the anaphylaxic symptomatology will linger for days or weeks and even mesh and blur into subsequent episodes.

The reaction of anaphylaxis in this case with no known trigger is all internal, like an epic battle of cell against cell, with no clear external stimuli (such as an allergic bee sting, ingesting an allergen... to compare and contrast to an allergic response) so, far too often, there is no warning when this anaphylaxis is developing. Anaphylaxis is bad enough when it is triggered by a known problem... when anaphylaxis can be triggered for no known reason, at any time, and instantaneously, it is an extremely dangerous situation. This is Systemic Mastocytosis.

Due to a sudden release of mast cell mediators into the tissue and blood, the Systemic Mastocytosis patient's blood pressure drops causing dizziness, weakness, nausea, vision issues, stomach/intestinal cramping, explosive diarrhea, tingling/numbness in extremities and the patient will often have tremendous difficulty breathing. Left untreated, this often results in loss of consciousness. When the body finally does respond naturally (which a healthy body would do) to this cellular reaction (if it responds at all... especially in the bodies of the typical unhealthy Systemic Mastocytosis patient), the patient will experience a very rapid pulse (tachycardia) and palpitations while still experiencing the nausea, weakness, breathing difficulties and a myriad of local symptoms. Injections of epinephrine are necessary to ensure avoidance of vascular collapse and death.

Let's look at the effects of various mast cell mediators when they are dumped into the body by degranulating mast cells:

Histamine: Vasodilatation, erythema (rash), edema (swelling), pruritus (itching), urticaria (hives), bronchoconstriction (causing difficulty breathing), increased gastric acid, intestinal cramping, further degranulation of mast cells, leukocyte activation.

Serotonin: Too much serotonin causes confusion, twitching and trembling, dilated pupils, shivering, goosebumps, headache, sweating and diarrhea.

Heparin: Osteoporosis and inhibition of localized clotting

Prostaglandin D2: Pruritus (itching), pain, rhinorrhea (runny nose), hypotension (low blood pressure), flushing, osteoporosis

Leukotriene C4: Bronchoconstriction (causing difficulty breathing), increased vascular permeability and contractility (a capacity for becoming short in response to suitable stimulus)

Tryptase: This is the one mediator which does linger in the body so it is traceable in laboratory tests. Only the Mayo Clinic has the equipment necessary for measuring tryptase in blood.


Regardless of which part of the body the mast cells 'attack' causing this degranulation of mast cells, the symptomatology is basically the same in these acute 'episodes'. The patient experiences a life-threatening drop in blood pressure, difficulty breathing, nausea, weakness, intestinal cramping, shivering, headache, sweating, diarrhea, muscle twitching and trembling, cognitive difficulties and, at times, loss of consciousness. All of this symptomatology comes on very suddenly (contractility) with very little, if any, warning.

As if suffering from on-going, repetitive, life-threatening anaphylaxis is not enough, symptoms that develop due to frequent mast cell granulation over the course of years include chronic pain in the form of deep bone and joint pain, overwhelming fatigue, incontinence (both urinary and rectal), pain, rheumatoid arthritis, osteoporosis, cholesterol issues and more frequent lingering cognitive difficulties.  

Before I get into discussing my own personal experiences with this illness, let me preface this with a short discussion about my previous spinal injuries since these spinal injuries still cause an ongoing daily struggle.

While working for the Department of Defense and US Air Force as an Air Defense Controller, I suffered two separate line-of-duty spinal injuries. These two incidents resulted in two herniated disks, four bulging disks, six compressed disks, two areas of spinal stenosis (injuries so severe they partially block the spinal fluid canal), a fragmented disk and vertebrae, and osteophytosis. Through extensive and extremely painful rehabilitation, I learned to walk again and learned the art of pain management in order to live my life without the use of narcotics or pain-killers. What I learned through these spinal injuries and the daily pain has helped me in managing my Mast Cell Diseases so I must point out that, as debilitating as they are, these spinal injuries helped to prepare me emotionally for the further decline in my health.

Today, 15 years after my first spinal injury, I still experience spinal pain so severe that it takes my breath away on a daily basis. The pain is always there. Some days the pain is searing. Some days the pain is aching. Some days the pain is debilitating and excruciating. Any activity, including my continued daily physical therapy, causes spinal pain. My days of running or jogging are over. My days of skiing are behind me. My days of basketball, hockey, rock-climbing, skydiving and football are history. My days of playing any leisure family sports such as volleyball, softball, bowling, water-skiing, tubing, sledding, etc, are a distant, but happy, memory for me.

You know when you are crossing a parking lot or crossing a road as a pedestrian and you need to just put a little skip in your step to quickly get out of the way of traffic? The pain I experience in doing this simple and mindless skip in my step actually takes my breath away... always. The pain shoots up my spine and into my extremities with each footstep.

You know when you need to wash a few dishes in the sink? Well, that slight bending over with my hands out in front of me holding a minimum of weight (a plate, a bowl) is excruciating after just a few short minutes. It takes my breath away and requires something such as a countertop to lean upon in order to catch my breath and manage the acute, searing pain.

At least once a day, I turn the wrong way or get careless and forget proper body mechanics resulting in a sharp stabbing pain so severe it buckles my knees... and, takes my breath away.

Even considering this pain associated with my spinal injuries, the pain caused by my mast cell disease can be, and is, equally painful and debilitating. This pain can be felt where the mast cells are attacking... ie, liver, gastrointestinal tract, spleen, etc. This pain is also felt in the long bones of the body due to long term mediator release. I have days of aching so painful in my thighs, shins, ribs, arms and even my joints that I can barely walk across a room without being reminded of my painful struggles through rehabilitation due to my spinal injuries. Just touching these bones causes terrible pain. This bone pain is very difficult to accurately describe.

Some days, in conjunction with the long bone pain and joint pain, my entire spine feels as though it is on fire. The prior experience with my spinal injuries, however, gives me the strength and knowledge I need to endure and overcome these new painful obstacles without the use of narcotics. I am absolutely against the use of narcotics for anything other than short-term, acute pain (such as from a healing acute injury or surgery or end-of-life pain management.)

This illness is also embarrassing and demoralizing. At any given moment, I can suffer from incontinence... and, I have suffered from this more times than I care to remember. Trust me on this, instantaneous incontinence is one of the most embarrassing and demoralizing symptoms anyone could have to endure. When it happens, you lose faith in your own body for weeks. You don't trust your body enough to stray more than a few feet from your bathroom nevermind stray from your home.

I regularly spend hours at a time in the bathroom fighting nausea, diarrhea and vomiting. For some reason this tends to happen through the night more often than not. Needless to say, the following day or two is time for rest and recovery.

During these mast cell episodes, cognitive function can be so diminished and confused that even speech can be difficult, if not impossible. I've been in emergency rooms struggling with trying to express my problems... the words seemingly lost between my brain and lips. Sometimes I simply cannot get the words out no matter how hard I try. What is most frustrating about this symptom is that I spent a career being highly adept at communication in extremely stressful situations. Now I have difficulty expressing my own symptoms at times.

The anaphylaxis I experience can come on slowly, one symptom at a time, almost deliberately or it can come on suddenly and overwhelmingly in an instant. This mast cell disease anaphylaxis is overwhelming with a cascade of debilitating symptoms... weakness, lightheadedness, flushing (feeling like a painful sunburn), nausea, vision issues, stomach/intestinal cramping, explosive diarrhea, tingling/numbness in extremities and tremendous difficulty breathing. As recovery begins... whether naturally or as a result of epinephrine injections... I experience chest-pounding palpitations, tachycardia, flushing followed by loss of all color (skin)... cognitive difficulties, speech difficulties, chills and shivering so severe I would classify them as violent. What I want to convey here is that anaphylaxis due to mast cell disease is a cascading fall of many terrible symptoms which leads to extreme pain and includes quite a violent episode. Many first time patients confuse these bouts of anaphylaxis with severe heart attacks. These episodes are violent and the debilitating symptoms linger for days or weeks of recovery.

The lingering cognitive effects can make simple decisions frustratingly difficult. For example, I could go to the grocery store to buy dinner and need to decide between two pieces of meat. One package in my right hand... one package in my left hand... I can look at both packages and actually know that it does not matter which package I choose but I am physically incapable of making the decision. Because I am incapable of making the decision, I become increasingly frustrated to the point of tears. At these times, just making the simple decision between right hand or left hand is physically impossible. Ironically, before my illness I worked as an Air Defense Controller making life-or-death decisions in an instant all the time. Now I have difficulty making simple decisions about a meal.  

Other cognitive difficulties can affect the ability to stay focused for longer than a few short minutes. Try getting anything accomplished around the house when you bounce from one chore to another within a minute or two! The cognitive difficulties are more varied than this but I think I have explained enough here for the purpose of this article.

Chronic and overwhelming fatigue are an everyday struggle. I must sleep at least two hours every afternoon in order to manage my energy. If I want to go shopping for a few hours (or need to go shopping), I must plan for storing up energy beforehand by resting and foregoing other little activities. If I want to spend some time with friends, I must ensure I am well rested. If I must accomplish a few mindless chores around the house, I must give up other things so I have the energy to spend on these chores everyone takes for granted. For example, on some days I must choose to forego a shower just to save a little bit of energy for something else that morning... You know when you feel you must forego a shower just to avoid wearing yourself down that you have very little energy to play with each day! Overwhelming fatigue is simply a fact of life and everyday occurrence in my life now. If and when I try to push myself too hard and subsequently wear myself down, my health crashes.

There is no cure for this illness. There is no medication to directly attack this illness. I do, however, have daily prescription medications that fill a fanny-pack that I must carry around in order to alleviate some of my symptoms. I have more than a dozen different types of medications in pill form, some others in ampules, others in inhaler mists, and some in injections. These medications which are simply for trying to minimize my symptoms are so numerous they fill a closet... honestly, a closet!  This is a lot of medications for any patient and especially so considering there is no cure for this particular illness.

If I miss just one dose of my four daily doses of medications, my body crashes in anaphylaxis within two or three hours. (This is what reminds me that I missed a dose!) If I miss a meal, just the stressor of hunger is enough to plunge me into anaphylaxis! 

None of these medications do anything about stopping or slowing the progression of this terrible, debilitating and life-threatening disease. None of these medications can ensure I have no episodes of anaphylaxis. None of these medications can ensure I have no embarrassing and demoralizing sudden bouts of incontinence. None of these medications can ensure I have no cognitive difficulties. None of these medications can ensure I have no pain. These medications simply minimize the frequency and severity of the symptomatology... on a good day.

In addition to these medications to help alleviate symptomatology, I am also on a low-histamine diet as well as a gluten-free diet. Although this is really more of an inconvenience as opposed to a hardship, straying from this diet always proves to be disastrous for my health. So, these diets do help alleviate some of my symptomatology.

Since I experience pain in my liver, spleen and gastrointestinal tract, clinically, we know my mast cells are overactive in these organs. It is arguable that aside from my known spinal injuries, I also experience mast cell activity attacking my spinal column since I occasionally experience searing, burning pain throughout my entire spine. I also regularly experience many neurological-like symptoms common to Multiple Sclerosis patients which are more than likely the result of mast cell activity. Early on in my illness, when my medication doses were lower and less frequent, I had severely debilitating symptoms such as difficulty walking, twitching, tremors, difficulty talking, and vision problems. 

Warm environments (consistently above 76 degrees or so) are known to consistently trigger a cascading anaphylaxic episode for me. Even without the cascading anaphylaxic episode, I have great difficulty breathing in warm environments. Anything which raises my body temperature causes the same effects... exercise, activity, movement, hot showers, hot tubs, etc. My body temperature must remain as stable as possible to keep my health as stable as possible.

A few years after developing Systemic Mastocytosis, I also developed the skin version of the illness, Cutaneous Mastocytosis. Although my case of this skin version of the illness is not nearly as bad as some experience, it is an added problem consisting of rashes and hives for no known reason.

In the meantime, I also have had numerous outpatient surgeries for skin cancer, including a lump taken out of the right side of my face resulting in 28 stitches and a thin, clean, three-inch scar. I suffer from eyesight problems, however, due to the rarity of this illness, it is not yet known if this is related or just a separate condition. Personally, I feel it must be related to either my illness or a side-effect of some of my many medications. Regardless, secondary illnesses are popping up regularly causing an even further deterioration to my everyday life.

I now have a team of world-renowned specialists associated with Harvard University, Brigham & Women's hospital, Dana-Farber Cancer Center, the Mayo Clinic, and various other hospitals and medical centers. I travel to Boston regularly for exams and treatment. 

(Note:  As of 2014, traveling to Boston for medical appointments has become extremely difficult and has only resulted in draining me of energy, money and fairly manageable health. The negatives of traveling for this research/care have greatly outweighed the positives gained by this trek to Boston. For now, I am sticking close to home and avoiding unnecessary travel, including medical research appointments in Boston.) 

I have blood tested quarterly. I have had numerous bone marrow biopsies with the promise of more throughout my life. I have had numerous skin biopsies. I have had countless cardiac and neurological tests over the years. I regularly have conversations with my specialists about the severity and transience of my symptomatology as well as conversations about the seemingly 'never-good' prognoses. These are conversations people hope they never have to have with their doctor even once but have become so frequent for me that they are sort of surreal and mundane at the same time. These types of conversations also promise to continue for the rest of my life.

Some patients live for decades constantly battling the life-threatening anaphylaxis and all the lingering symptoms but never developing any secondary illnesses. This, unfortunately, is the best case scenario... which, in my opinion, is akin to being doomed to a life of struggle and torture albeit with short periods of 'good' days. (Which really means that no prognosis is "good".)

Some patients develop a combination of different forms of the illness. Some patients develop blood disorders as secondary illnesses. Some patients develop leukemias or lymphomas as secondary illnesses. Some patients develop mast cell leukemia. 

Even if a patient lives for decades, struggling with and fighting only the life-threatening symptomatology of the primary illness, one could justifiably say the prognosis is poor due to debilitating quality of life issues. Certainly, if one of the many secondary illnesses develop, the prognosis is definitely poor.

I have had this illness for so long, at this point, that this life of chronic illness has become 'normal' for me. 'Normal' consists of a struggle between pain and pain management, understanding energy management while trying to balance a modicum of social life and productivity, managing and overcoming overwhelming fatigue, and dealing with the demoralizing and debilitating symptomatology of this terrible rare illness every moment of every day. 'Normal' also consists of understanding there is a 'new normal' every day.  'Normal' is embracing challenges and change.

This "new normal" in my life also has completely changed which people deserve to be in my life on a daily basis. I find that I no longer tolerate ignorance nor stupidity... I simply do not have the energy for it nor should even a healthy person tolerate this nonsense. I don't want to hear nor do I need to hear advice from healthy people who know absolutely nothing about my illness. I don't need someone mothering me telling me what to do, what not to do, or telling me I should not do something. I'm capable of managing my illness and living with the consequences of my decisions like every other adult in the world. 

Another point about "those in my life on a daily basis" is about family... I've seen far too many families collapse under the pressures of chronic illness since being so ill. People must learn that when one person in the household develops a chronic illness, everyone in that household develops that illness. They don't physically develop the symptoms but they must, however, live with this illness... they must accept this illness... they must understand this illness. Everyone in the household family must be an active part of a team or the family unit will fail miserably. Everyone must clean... everyone must pick up after themselves... everyone must know how to cook for themselves... everyone must do their own laundry... everyone must understand disability and do their part to help... with understanding, respect and dignity. This is family. Those who do not adhere to these rules (those older than 12 years old), should be cut out of the family like an insidious cancer. I've seen many, many families break apart in divorce and anger simply because of a lack of understanding, a lack of empathy, a lack of participation... all of which is simply ignorance. 

Today, I am fortunate to have a loving, understanding woman in my life. She intimately understands chronic illness since she, herself, is struggling with lifelong chronic illness. When we met, we immediately had a respect for each other... we understood the meaning of dignity and understanding... we completely understood chronic illness... we understood the roles of family and friends in a household of chronic illness. I am very fortunate in this respect.

Despite the pain and struggling with the symptomatology of mast cell disease, I still do chores around the house when able, renovate the house when able, exercise as my health allows, socialize when rested (although rarely), participate in family activities, and make short travel arrangements when able. I utilize pain management and energy management techniques to work through the daily obstacles, struggles and pain. Some days I feel 'good'... a 'good' that is qualified on a very different scale today than just a year ago. Other days are unpredictable, at best, or downright miserable.  

Hard to believe, but all of this described above has become my 'normal everyday life'.

Comments

  1. Sir, I am sorry to hear about your health, but it sounds like you're doing all the right things to manage your overall wellness. My wife was recently diagnosed with Mast Cell Activation, and recently retired from the Air Force after 20+ years on active duty. How did the VA rate your Mast Cell Disease? Take care, Ted

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  2. Sorry to hear about the recent diagnosis of your wife. If you have any questions about the illness, treatment, things to watch out for, etc, feel free to write me. I'll answer more about the VA in an email...

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  3. Patrick,

    I can't thank you enough for sharing your journey. I am just learning about systemic Mastocytosis and found you after Googling "Mast Cell Degranulation and Stabbing Pain," after having the most agonizing month of my life. I have been sick for four years now and diagnosed with everything from Lyme, Fibo, CFS, POTS, Depression....you name it. After much research, and putting a lot of painful puzzle pieces, I am finally scheduled to see a Mast Cell expert in November...and strongly believe Mast might be a big part of my picture. I look forward to learning from you and reading more about your experiences. This post is one of the most clear and concise things I've ever read to describe what life is like in my shoes. I'm very sorry you wear them too. <3 Note: Totally get the "meat" analogy and frustration to tears. YEP. That sums it up perfectly.

    Wishing you well from Florida

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    1. Hi Kathy... I'm very happy that you found some of my posts interesting and useful. I'm not too happy to hear another person has found themselves on the same path in life as I. This illness can be torturous, at times, and completely changes every aspect of the life of the person struggling with this illness but all those in their life as well (as any chronic illness does). My quick advice... Be religious about medications (your specialist will eventfully find the right balance for you)... Be religious about your diet (find what is good for you and what is bad for you and stick with it but continue to carefully monitor the effects of every food)... and, effective Energy Management. Good luck, Kathy!

      One last piece of advice... I highly recommend a support group to help guide new patients as well. Here is one which is popular... https://www.facebook.com/groups/155824303735/ (Called The Mastocytosis Society, in Facebook) It is good for some very useful and life-saving info... and, as with any group, it is also useful for some bad info and too many negative vibes, at times. It is easy to quickly figure out who to trust and who to just nod to and say thank you. Thanks again, and good luck!

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  4. Thanks, Patrick. I hear you on the foods and meds. I've been in and out of the hospital constantly this month--reacting to nearly every test, medication, smell, food, etc. That was actually one of the big clues that my past hives/angioedema/anaphylaxis stuff stuff was a bigger problem than we previously thought. I am currently in the dreaded I can only eat 5-6 things category (dangerous, I know).

    Also, thanks for tip on FB group. I am in there, as well as a few others. Lots of good people and information, and yes...a few noodles. LOL

    PS Don't know if you ever looked at if, but another thing I am being worked up for is Porphyria. In researching, there seems to be some loose overlap with the two conditions...although of course most docs will laugh and say "You think you might have not one, but TWO rare disorders?!?"

    The professor's book I am reading hypothesizes that neither are as rare as we think...just overlooked and rarely tested. Being a sick professional, I'm sure you've looked at this...along with 10,000 other things, but thought I would throw it out there. The thought of proactively infusing Panhematin to stop attacks sounds pretty exciting. :)

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  5. Your blog has given me a new wealth of knowledge. For the past year (symptoms have gone on for two years) my doctor has been trying to figure out what was wrong with me and after reading this I will suggest any tests she can do for this. I, unfortunately, am using a health department doctor because my symptoms have been so bad that i can't manage to work full-time or part-time even. Up until this started i hadn't even called in sick to work over a 7 year period (i am 27 now). But going through the health department means they don't want to run any tests besides basic cbc without cause which i can understand in a way since i currently have no income. It started with what felt like allergies two years ago and has progressively worsened over time. Then the itching, hives and pain started. I ended up in the hospital because i couldn't breath and the abdominal pain was almost as bad as when i had appendicitis as a child. Then my lymph nodes became enlarged in my neck, underarms and elbow and have been for over a year now. My old doctor thought i was exaggerating, she pretty much said it was all in my head. Thankfully my new doctor is doing everything she can to try and help me. She first mentioned a gluten intolerance and put me on a gluten-free diet, which helps slightly but only in alleviating some of the stomach pain. I am on a ridiculous amount of antihistamines a day and if i forget to take it, or don't take it in time, it gets so bad that people think i have the flu. Beside the sinus issues that occur during that time it also makes my throat feel as if it is swelling and closing and the itching and hives get really bad. But it isnt just that, the bone pain is like nothing i have ever experienced before. Just brushing my teeth and doing dishes causes my back to freeze up and hurts so bad that i can't move. I have very few good days and even then i have to be careful with what i do so i don't overdo it. I have to nap for a couple hours about five hours after waking for the day. My doctor said she is sure im having and allergy-like reaction but cant find a specific trigger. My wbc has been elevated for over a year, my platelets are steadily dropping, and in less than a year my vitamin D and C drooped dangerously low and now i have iron-deficiency anemia. I wont continue rambling (though what i wrote only skims the surface of my symptoms), but i want to thank you for sharing this information with everyone. Maybe with this info my doctor can find out what is wrong. As i read this, everything resonated with what i feel on a daily basis. I hope you have a lot of good days ahead of you :)

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    1. Hopefully your doctor(s) will persevere and find out exactly what is causing all your problems. This illness can affect so many different things and in differing ways. It is a complicated illness which can get even more complicated when secondary illnesses and/or allergies cloud the true issues and divert attention. When doctors blame 'anxiety' or 'stress'... fire them and move on. These types of doctors clearly are not willing to put in the time and effort to learn about a complicated and dangerous illness which is obviously unknown to them. Don't get me wrong... anxiety and stress WILL worsen this illness but it is not the cause. During the diagnostic stage, my only source of anxiety and stress stemmed from the ignorance of some of these healthcare "professionals". Hang in there and fight for the healthcare, respect and dignity you deserve.

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  6. I can't than you enough for writing this. This is the absolute best description I've found yet. I was diagnosed yesterday after years of trying to figure out what was wrong. Once I decoded the time is right to tell my extended family, I will be using this article. Thank you so much. Prayers for you to find healing. A miraculous healing.

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  7. I'm glad you found this blog entry useful. My advice... find a team of doctors who listen and who you trust... take your medications religiously... be careful about your known triggers... pre-medicate for big events and medical procedures... and try to find something to do every single day so you can continue to feel productive, but never push yourself too far and into poorer health. Best of luck... and, I'm sorry to say, welcome to the club! : )

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    1. Toula Milios GuilfoyleJuly 26, 2016 at 3:50 PM

      Thank you. I moved to rural NH from MI year ago and took Dartmouth Hitchcock awhile but excellent allergist Dr. ELIAS DIAGNOSED &REFERRED ME BOSTON BUT 6MO.WAITING LIST.I HAD DOCTORS TELL ME MY SYMPTOMS WERE MADEUP&MY PHOTO PROOF DOCTORED. NOTHING SURPRISESHORT ME.I'M BOARD CERTIFIED FAMILY PHYSICIAN DISABLED BUT FOUND MOST DOCTORS DONOT LISTEN TO PATIENTS.I GOT ADVICE FOLLOWING VEGAN GLUTEN-FREE HISTAMINE FREE DIET.I WAS 7YRS VEGAN that totally reversed my barrets&cancerous esophageal &gastric cells. I used be huge meat eater especially bbq*&Italian luncheon meat consumer.I LEARNED ON MY OWN DIET-NOONE IN ALL HOSPITALSPOUSES MI-MAYO CLINIC-CLEVELAND CLINIC- SLOAN KETTERING- NONE ADVISED ME OF CORRELATION OF DIET&GASTRIC CANCER

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  8. Hi Patrick,
    Isn't it wonderful having to explain all the time why we feel like crap but still look fine? I also have systemic mastocytosis which was officially diagnosed in May of 2014. I currently see a specialist at the U of M Cancer Center in Ann Arbor, MI. I love having to explain why two trips up and down the stairs can require a 30 minute rest or more. Although I still work full time I, too, struggle with completing tasks around the house. You're the first person I've seen mention the ability to stay on task. I'm constantly switching my focus leaving dozens of partially completed projects around the house and yard. I start something and after sitting down to rest I get sidetracked and start fussing with something completely different. My wife has been wonderful in supporting me through this crappy disease but I can see the frustration she also endures as a result of my condition. We also don't socialize as much with friends since I tire so easily and I can't handle the stress and anxiety of crowds well. Several of our closest friends are frequent social drinkers, as I used to be many years ago. It's still hard for many of them to accept the fact that I can't, or don't want to, sit around and polish off a case of beer and be rowdy drunks as we did when we were younger. I carry my EPI everywhere but luckily I've never had to use one. I do carry a pocketful of rescue meds which I end up using several times each week.
    Best of luck in your endeavor to live your life as "normally" as you can. You're not alone....

    Fish

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    1. Thanks Fish... Yeah, we rarely socialize anymore for a few reasons. I can tell people don't know what to talk about and that makes things very awkward. I don't have much to say anymore since my life revolves around my poor health. And, I definitely don't have the energy for any of it anymore. Just one afternoon out socializing with friends will wear me down for at least a week. I'll add one more reason... I rarely feel well enough to wander from the house (or bathroom). Thanks again and best of luck to you as well.

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  9. Hi Patrick,

    Thank you for such an enlightening article. I am newly diagnosed with Mastocytosis w/a TMEP variant via skin biopsy. I suspect that mine is more than cutaneous as I have all of the symptoms that you described including two anaphylactic. The sad part of the whole story is that I believe I have had this my entire life with the skin sun rashes presenting as a child. Since none of the doctors knew what this was, I was treated for poison oak. The calamine lotion that they used to treat me with was the worst thing I could have been using. One time it was so bad, I was hospitalized in the college med center for a week without a diagnosis. Now I know what I had. I have been going to the doctor for my whole adult life and not one has ever thought to test me for mast cell. They told me that this was psycological and that I had allergies and asthma. It was only because I went to a dermotologist that biopsed an unusual looking spot on my thigh that I received the diganosis at all. Needless to say, I have seen my internist who was very apologetic about my diagnosis and I am now waiting two months to be seen by a Hematologist at UCSF or Stanford. Apparently, I have to be really sick before one of the specialist's will see me so they have ordered a slew of tests. Trust me, having the C Masto/Tmep diagnosis has had me all over the hospital with Dermatology passing me off to Allergy and round we go. This very frustrating experience makes me think I will need to schedule at a specific medical center with a team that understands this disease and that it will not be on the West Coast. The thought of the travel stresses me out to the point of now being able to make a decision and perhaps not getting the proper care. What would you recommend at this point?

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    1. Sorry to hear you have found yourself on this particular path in life. I can tell you that it is a bit grueling at times but there also will come some "normalcy" in time. The normalcy isn't necessarily good but it becomes and seems "normal". Both you and your primary care physician should be searching for someone who specializes in mast cell diseases... usually someone in Allergy/Immunology. For many years, I was driving to a specialist four hours away but that has proved to be too much for me. The traveling was far more detrimental to my health than the benefits gained by seeing this particular specialist so I am currently seeing someone locally. It required some searching (over the past 12 years or so) but my primary care physician found someone for me. Traveling is EXCEPTIONALLY difficult with this illness and the problems caused by traveling linger for months. A good specialist will work on finding the best cocktail of medications and the best diet for you. Understanding and eliminating your particular triggers is important as well. A fairly decent resource for support and advice is the TMS Facebook group... https://www.facebook.com/groups/155824303735/ I wish you the best of luck and good health!

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