Friday, October 7, 2016

MCAS aka The Never Ending Hell Diagnosis

Where to start with this. It has been a while since I have updated, but I spent most of this summer quite ill, so I thought it would be time for an update. I touched on this in the past, but I have been officially diagnosed with mast cell activation syndrome. Yet another rare incurable condition. The easiest way to describe it is to state that I am allergic to everything, but not all the time, so one day I may be allergic to tomatoes, the next day I won't be.
So about April/May of this year I got ill with a sickness, they couldn't figure out what it was, but it was most likely a mild infection, so a flu or cold or something. I rarely get ill with anything common, so it was whatever.  Unbeknownst to me, that illness opened up he MCAS flood gates. Previously I had minor symptoms of MCAS, obviously they were so minor that I didn't have to treat them besides symptomatically when things would arise.  Again, to me this diagnosis was exciting because there are treatment plans, but of course being an new and rare diagnosis, it isn't even taught in medical school, med tech school, nursing school, etc., so as you can imagine the rigor for getting diagnosed and treated is very strict. I had to get two mediators positive on my tests.  I took my first round of tests in February, unfortunately I only had one mediator show, partially because they mishandled one of my tests, which is very common (these tests are very particular, some have to be cold at all times, and they go to different labs all over the country). I was bummed, but on the second round of testing in April I lit up those tests like a Christmas tree, five mediators were positive. Of course next step in the process isn't just getting treatment, you start with an H1 and H2 blocker, which I was already on.  Then you are allowed to start one treatment a month, luckily there are tons of treatments, unfortunately because the illness is so new, some medications work, some don't, it depends on the symptoms and the person, plus sine mast cells are stubborn I have to be on a drug for a month before we rule it in or out. My doctor said it could take me up to two years to find the right treatment plan. Since there is no one miracle drug he just starts you on the cheapest drug and we work up the list.
Well now that we have some more back story built up, I got this illness, and things went to shit. My body turned into a constant allergic reaction state, anything can set off mast cells, stress, light, heat, cold, food, particles in the air, smells, etc. you name it people have reacted to it with MCAS. My life turned from being okay dealing like I always deal with my issues per the usual, to being unable to even sit on my couch on home typing on my computer without going into anaphylaxis. The worst part about it was that I was now allergic to things I couldn't even see, I became allergic to food I used to be able to eat, I became allergic to meds that were previously fine.  That is just the nature of MCAS, your body is hypersensitive and attacks on overdrive. I literally wasn't sure if I was going to make it at some point, the toll it takes on you mentally and physically is horrible. I don't know how to better describe it other than that it feels like you are dying in an agonizing manner, your brain feels so much pressure from the swelling like it is going to burst, your skin feels like it is ripping off, your nose runs, your throat clogs up with mucous, you start to shake, you can't talk properly, you lose your vision, your lymph nodes swell, etc etc the list goes on. I never knew when the attacks would hit, I was forced to stay at home all day, live in a face mask and I still would go into ana multiple times per day. It was hard, I lived on benadryl, ERs and prayers that I woke up the next day. I was lucky with work because I had just rolled off a project and had some downtime until my next one, but I did get to a point where I almost had to quit work because I couldn't even take a phone call without going into ana, sitting at my computer was next to impossible, I didn't even drive for weeks and I only recently started going places on my own again in terms of driving and what not. I was in that state for about two months until I saw my specialist, luckily the first medication he put me on leveled me out, at this point I am stable at home for the most part and I only have a minor attack maybe once a week or once every other week, I have symptoms every day and I am always on edge, so I still wear a mask out of the house, but from time to time I try to go places without it. I now carry four epi pens with me and a pack of benadryl just in case, but it has been hard. I feel like I have probably lost a couple friends from this because I had to keep cancelling plans and was unable to show up at events. I am still working on the right meds, so going out for too long is tough without loading up on a lot of pre meds like benadryl and anti inflammatories to keep the nasty mast cells down.
Like I always tell my GI doctor when he asks me how I am, I always tell him well I am still alive and that is all I can say at this point, I am only at 60-70% better with my current state, but that could change any day and plummet back down, I am still trialing out other meds to get back to my normal state and possibly even a little better than I was before......nah,,,,,,lets just keep the goals to getting back to my normal sick status quo at this point

I know this is a lot of crazy info to absorb, so feel free to reach out, send me a message or leave me a note if you have questions. I am totally open and willing to chat about it to anyone who is curious. I am still working on it right now, but mainly focusing on my son, work and just keeping everything together in my daily life. Thank you everyone who has supported me <3 <3