Friday, January 22, 2016

Update One Year Later

Today is January 22, 2016.

One year ago today we received the official diagnosis of Mast Cell Activation Syndrome (MCAS).

I went from being told there is nothing wrong and everything is in my head to having test results showing proof of a rare disease.

In some ways, so much has changed. In other ways, it feels like we've gotten nowhere.

I went from having just my specialist in MN and my GI doctor in PA to now having a neurologist and allergist locally who are working to help us figure things out. I went from anaphylaxis almost every time I tried to eat to not needing my epi pen for going on 6 weeks now. We identified the source of my muscle weakness and balance issues as uncontrolled low blood sugar. We brought Leni home as my service dog to help me regain some control over the unpredictability of my symptoms and reactions. We are in the process of getting insurance approval for some new treatments that may be the key in alleviating my symptoms.

At the same time, I'm still dealing with daily, persistent symptoms. The severity ranges from mild to debilitating, and I have no idea what each day will bring until it comes. I can do everything right (take my meds, avoid my known triggers, give my body time to adjust/recover, etc.) and still deal with severe symptoms. I've had a feeding tube for almost a year now and still cannot tolerate solid food and sometimes not any food at all. While I do have doctors who are willing to help, many times they just don't know what to do. While we know my blood sugar is out of control at times, we still don't know how to manage it. Leni is making progress with her alerts, but when I am so continuously reactive, there is only so much she can do. My insurance has already denied some treatment options once, so we are in the appeal process and hoping to get it approved this time.

This time last year I was working as a graduate assistant at school teaching undergraduate exercise courses and doing research in the labs. In August I had to give up my assistantship because I was unable to keep up with my responsibilities. I am slowly creeping toward finishing my degree around doctor appointments, medication induced brain fog, and symptoms that make me too exhausted to think straight. I made it almost a year without being admitted to the hospital, only to start 2016 with my longest admission to date.

One step forward, two steps back. For every bit of progress we make, we get knocked back again, sometimes seemingly farther back than where we started.

A year ago when I wrote the post about the diagnosis, I had no idea what the year would bring. All I knew was that we finally had an answer. I felt relieved, validated, and thankful, but also scared, uncertain, and nervous. I had just been inducted into a club no one wants to be a part of with no clear cut answers or understanding, even by the best in the field.

Even my specialist, one of the top doctors in the country for mast cell diseases, readily admits how little is actually understood about the underlying mechanisms. Every case is different and symptoms can vary widely from patient to patient. Treatment is trial and error and what works in one case may not work for the next. It is frustrating not only for us as patients as we struggle to manage our symptoms, but also for the doctors who truly want to help us but sometimes have no more answers to give.

We may not have answers yet, but research is promising. Just this past December I had the opportunity to be a participant in a research study being done looking at the genetics and mechanisms in MCAS patients. While the results are still months away, knowing that research is being done is encouraging. One day it won't be trial and error anymore. One day treatment will be tailored to each patient based on genetics and/or symptom patterns. One day, someday, there will be a cure.

Until then, we treat the symptoms and manage things as best we can. It's been one year and even though things are not good, we are moving in the right direction. We hope and pray this year is better than last year. Maybe by this time next year I'll be able to share how much more progress has been made and the results of the research being done.

One thing is for sure, A LOT can happen in a year. Maybe this will be the year my symptoms will randomly start improving...who knows, it's possible =P

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