Mayo Clinic Trip: Diagnosis Edition

I went out on a limb. I prayed for answers. And God delivered.

After years of bewildering symptoms, I was given a name.

A name is such a gift. Your insides never feel quite settled when you don't know how to identify a thing. A name says, "You're not crazy. You are not alone." These are comforting truths when the disease is isolating and causes you to question your own sanity.

I once had an allergist who was as perplexed by my symptoms as I was. Though I began to react to the allergy shots with increasing violence, he continued administering them along with steroids and epinephrine because he didn't know what else to do. After becoming tired of weekly anaphylaxsis, I ended the treatment. Recently, I encountered another allergist who refused to believe me, concluding I must be crazy because my symptoms did not fit with what he knew. Never have I had a doctor who both believed me and knew what was happening to me until Dr. Park of Mayo Clinic.

God bless this man.

After almost ten years of suffering and an earnest, two-year-long quest for diagnosis, Dr. Park told me on May 27, 2014, I have Mast Cell Activation Disease (MCAD).

Within a few minutes of my initial consultation, he suspected a disease involving the mast cells as opposed to a true allergic disease. Mast cells are found in the body's tissues, and promote immunity in a healthy person's immune system. Modern medicine tells us mast cells are disrupted by IgE antibodies. These antibodies are what allergists are looking for when they perform routine skin and blood tests. When the antibodies attach to a specific antigen such as ragweed pollen, they sensitize the mast cells and crosslink. The mast cells then break apart and dump certain chemicals like histamine, leukotrienes, and other nasties. The difference between true allergies and mast cell disease is the catalyst which angers the cells. With IgE allergies, the trigger is specific. With mast cell disease, the triggers are diverse and numerous.

In my experience, triggers are either debilitating or dangerous. Though the differentiation between debilitating and dangerous triggers varies from patient to patient, there are some commonalities. Common life-threatening triggers are fire ant, wasp, and bee stings. Typical debilitating triggers include high histamine or histamine releasing foods (fermented foods, alcohol, cheese, processed or left-over meats, yeast, many fruits, coffee, chocolate, tomatoes, fish, shellfish, wheat, nuts, soy, dairy, etc.), latex, chemicals, pesticides, fragrances, heat, cold, friction, injury, NSAIDS (Advil, naproxen), pollen, acute illness, and emotional stress. (Insect stings, peanuts/tree nuts, and latex are my most dangerous triggers.)

As you can probably guess, a person has difficulty avoiding this many triggers over the course of even one day, so the mast cells are continually releasing their contents, causing inflammation in all systems of the body. The chronic, widespread inflammation leads to quite a range of seemingly unrelated symptoms. The most common symptoms are flushing, itching, hives, chronic constipation and/or diarrhea, nausea, intestinal cramping, chronic fatigue, headache, wheezing, cough, dizziness, low blood pressure, fainting, fibromyalgia, arthritis, neuropathy, and shock. I have experienced all of these, most on a daily basis.

Because Dr. Park is knowledgeable and well-read, he immediately thought of mast cell disease of which there are several subtypes. Some types are worse than others. There are also a couple of altogether different diseases with similar symptoms. Dr. Park ordered specific blood and urine tests to exclude the possibility of systemic mastocytosis, mast cell leukemia, pheochromocytoma, and carcinoid syndrome. All labs came back normal which indicate MCAD.

According to The Journal of Allergy and Clinical Immunology, the criteria for a diagnosis of MCAD are:

1) Symptoms consistent with mast cell mediator release affecting two or more organ systems.

Check!

2) Other diseases with crossover symptoms ruled out.

Check!

3) A positive response to antihistamines and mast cell stabilizers.

Expected. Dr. Park is confident my symptoms will improve with the help of these drugs.

Basically, MCAD is diagnosed based upon clinical evidence and the exclusion of all other explanations. There is no cure for mast cell disease at this time. Not much is known about the disease other than it is real and it can be managed with a strict diet, lifestyle modifications, and relatively tame medications.

My life is unlikely to ever be "normal," but I'm okay with that. I'm not normal, so why should my life be? I have high hopes that the medications along with the continuation of nutritional therapy with Jennifer, regular treatments with Dr. Yakaboski, and regular chiropractic work with Dr. Frieden will eventually lead to a better quality of life. Insect stings will always be dangerous, I will likely continue to make my own deodorant and toothpaste, and I will usually use essential oils before medication. I have no reason to return to the Standard American Diet (SAD). But maybe I will be able to attend church again. Maybe I will be able to go to a movie with my husband. Maybe I can leave my home without a mask. Maybe I won't feel miserable every time I eat or end up in bed flat on my back with every virus which crosses the threshold.

I have no reason not to hope. God's love has made me bold. My recent encounter with His faithfulness has freed me from fear. I am resting in His Word--

"And whatever you ask in My name, that I will do,

 that the Father may be glorified in the Son.

 If you ask anything in My name, I will do it."

--Jesus, John 14:13-14

Obviously, this verse isn't a blanket promise. God doesn't always do what we ask. But when we abide in Christ, we know better what to ask for. And if we knew everything He knows, we would do things in the exact manner He does things.

I never asked Him for a diagnosis before last Sunday because I never felt compelled by the Spirit until then. I asked with a kind of desperation I had not previously experienced. It was a "do or die" kind of prayer. On Tuesday, God answered my request. While studying Jeremiah 17, I came across this verse:

"Heal me, O Lord, and I shall be healed;

Save me, and I shall be saved,

for You are my praise."

--Jeremiah 17:14

It has become my new prayer. I don't know when God will heal me, but I believe healing is coming. I don't know to what extent I will be healed, but I am comfortable leaving that decision in the ever capable hands of my wise and loving Father. For now, I will enjoy His goodness I have experienced here in Minnesota, and focus on getting back home to my Superman and red-headed loves. 

May God bless you all for praying me through this experience. I am so humbled and thankful to be a vessel of God's love and power. I am glad you were able to witness it! If you don't know Him, oh how I wish you would! There is no one more worth knowing! If you want to talk, I always have time and energy for conversations about the Savior.

Grace and peace.