Kellye's Story

I really wish medical professionals would remember that everything we know about the body is what we know as of today. We discover new things about the body every single day. 

How It Began

When I was a child, my mother noticed that I had lots of environmental allergies, but they weren’t considered to be severe, for example grass and pollen would set off typical skin and nasal reactions. Other than this, I had no previous medical history relating to any conditions at all, then at age thirty-five I noticed that I was not recovering properly from workouts after exercising, which led to a constant feeling of fatigue and soreness. I also began to notice that food was not digesting properly, and was advised to cut out dairy, which helped to ease some of the symptoms but I would still experience some digestive issues.  

Two years later I suffered the worst headaches of my life and endured the effects of these for another two years before it was determined to be due to a spontaneous leak of cerebrospinal fluid, I had two blind epidural blood patches to resolve this but have also been diagnosed with POTS as a result of the leak. Through all that time my digestive issues never resolved and I was beginning to notice that I was getting full after eating very little food, yet was gaining weight. Alongside all of this I still experienced other symptoms which I'd had for a long time like gut inflammation, food intolerances, bloating, nausea, and skin rashes. I have also come to understand my triggers: dairy, tuna, egg whites, fragrances, sorbic acid and benzoic acid, neomyicn, propolis, benzyl salicylate, and stress. 

Towards A Diagnosis

My journey in seeking a diagnosis was long and arduous; I experienced a lot of bizarre and random symptoms and although all of this was initially understood to be unusual for me and I was referred to specialists, I was dismissed continuously but after I began recovering from my CSF leak, I found a doctor who understood well enough to take me seriously and make the necessary referrals which would lead to the discovery of my MCAS. Along my journey I have seen fifteen neurologists and six headache specialists, six cardiologists and endocrinologists, four allergists/immunologists, four gastroenterologists, five dermatologists, and a total of nine other specialists across different divisions.

I have been misdiagnosed with stress, anxiety, and functional neurological disorder, but after a tryptase test came back as normal I was sent for a biopsy of CD117 which confirmed MCAS. Fortunately, we found that Allegra and Pepcid immediately resolved my issues, so my daily treatment routine consists of four doses of Allegra and two doses of Pepcid. Other than this I make sure to give my body lots of rest, I eat well, and am conscious to manage my stress in order to control my symptoms.  

doctors accused me of making up my symptoms for attention or to seek drugs!

Getting Support

Because MCAS manifests in lots of different ways and cause a lot of problems across a lot of different body systems; what works one day may not work the next. I have personally lost friendships and have strained relationships with family members who also did not believe me; I wish this was something more people and medical professionals in particular understood, so weren’t quick to assume someone is faking or exaggerating. It’s astounding the number of times a physician has told me something was impossible, only to find out that it was absolutely possible and was happening to me. I wish they knew how powerful and validating it is for them to admit when they don’t know something instead of pushing that back onto the patient and making them feel crazy.   

It’s very frustrating to know something is wrong and be continually dismissed.