MCAS & Doctors: The Challenge Of Getting Care With A Rare Disease

I’ve been essentially blackballed from getting in to see my local and only gastroenterologists (all five of them – they all work at the same clinic) and I’m trying to process that this is happening to me (me!) while simultaneously trying not to take it personally, or worse, let it bother me to the point of getting sick.

I don’t need that.

I’m not alone when it comes to this phenomenon. Many MCAS patients are finding it difficult to find doctors willing to take them on once they learn of the complexity of our condition. I almost can’t blame them, really, because when you think of it, we must present as a huge challenge that our doctors may have no clue how to handle and we may also very well be too much of a liability with our tendency to go into anaphylaxis without warning.

At least the shockers among us. They’re making it really  hard for us leakers to get help here!!

I kid, of course, as we are all in this mast cell craziness together. Along with our cousins who have mastocytosis, it’s apparently not uncommon to find ourselves unable to find care from a wide variety of specialties including gastroenterology, cardiology and even (yep!) dentistry. I recently read on a forum post somewhere where an MCAS patient had to go to four different oral surgeons before finding one willing to take her on.

It’s really that bad out there, folks.

So what can we do about it? Not much, apparently. Doctors that are in private practice have every right to turn away a patient for basically any reason they choose including feeling uneasy about handling a rare and incredibly complex disease like MCAS.

As a patient I feel a bit painted into a corner because in my case there are no gastroenterologists to help me with my co-existing diverticular disease in my area, which leaves me no choice but to travel quite a ways and that’s if I can even find one willing to take me on outside of the University of Utah who originally scoped me. I can’t go back to them because they are out of network and also because the three plus hour trip is far too triggering for me still. I can’t risk my health and I can’t afford it, basically.

So I’m in limbo. I’ve had a lot of problems with my gut lately and want to talk to a local doctor about it but I literally have no one at all. My immunologist is amazing but he isn’t an expert in that area. We know inflammation from the MCAS is triggering my diverticulitis over and over, and we know that controlling the mast cell disease will alleviate a lot of my other problems but…

…but what if?

What if my diverticular disease needs more attention or treatment as I get older and things don’t function or heal as well? What if it gets worse (it’s not getting better!)? Do I now have to just wait and go to the ER if it bursts open and poisons me, hoping I make it in time?

I honestly have no idea. All I know is the ironic thing about all of this is if that happens guess who the on-call doctor at the hospital treating me will be? That’s right, one of my local gastro docs who refused to see me.

Wouldn’t it make more sense to get to know me and my condition as a patient that they might end up having to treat in the ER down the line if things go terribly wrong??

Of course it would.

And with this disease, as my UofU gastro doc said to the nurse questioning if I really needed all the pre-medicating before my eye-wateringly expensive scope last year, “you just can’t risk that!”.

Well, looks like I have no choice. Welcome to mast cell hell.

 

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