In my last post in this series, I jumped right into the meat of this amazing book by Dr. Lawrence Afrin and spoke about the fact that MCAS is not only chronic and affects every system, but if the numbers are right, this disease may be an undiagnosed epidemic affecting as many as one in six people.
Can you imagine that?!
That’s a lot of us suffering. Which means we really need to get the word out so they can get on the right therapies and find some relief!
It’s mind boggling how well I responded to the right medicines after years of having nothing but trouble trying a wide variety of pills, potions and remedies. I have come SO FAR in the last year but lately I’ve been struggling with a few things, mainly fatigue. It may just be winter here in Idaho, or a lack of vitamin D or the fact that I slacked off on my fitness or even a combination of all three of these. The disease itself causes crushing fatigue all by itself, too, so it’s almost impossible to pinpoint a cause. It may even be the medicines, but I don’t seem excessively drowsy or sleepy. It’s not that sort of fatigue, rather just an utter lack of energy.
The first chapter actually addresses this with Dr. Afrin’s description of his first patient he realized had MCAS:
She was tired. When I first walked into the exam room on the first day I met “Patient #1” in March 2008, her marked fatigue was obvious, almost palpable. She had other problems, too. Plenty of them. But “tired” was her “chief complaint”…
Oh, hello! Welcome to my world!
And it certainly wasn’t the kind of tiredness one gets from insufficient sleep. No, this was the kind of tiredness that the word “malaise” was meant for. A total lack of energy for no apparent reason.
He definitely “gets it”. The term “lethargic” also comes to mind. It gets worse:
At merely 58 years old, her life had been ruined by this draining fatigue. Previously a high-energy, athletic, intelligent, highly productive, successful independent small businesswoman, she had been reduced over several years by this progressive fatigue to a shell of her former self.
The fatigue is incredibly debilitating but did you notice that she had MANY problems, too? This brings us back to the fact that MCAD is typically multi-systemic and most people with this disease have been ill for decades with a multitude of ailments and complaints. I know from my own experience the head-to-toe inflammation is what I was most concerned about when I first saw my immunologist. Dr. Afrin describes this in Chapter Five, right where I left off last time:
…most MCAS patients live their entire lives without diagnosis, or even suspicion, of the root issue underlying the plethora of problems (many of a generally inflammatory nature) that they often acquire.
I had inflammatory disorders in every system it seemed, along with allergic responses to all sorts of things, food in particular. Except these weren’t typical allergies and the food allergy tests came back normal for me.
Dr. Afrin has seen this happen and he had this to say about it:
I have seen MCAS patients who have undergone serial allergy tests which sometimes shows them to be “allergic to everything” and at other times (with no changes in environment or treatment) show them to be allergic to nothing…
He then talks about the fact that doctors generally don’t know what to think of these sorts of test result oddities and patients often eventually stop telling doctors about our symptoms because we realize we aren’t getting anywhere by reporting every little thing (some not so little, like fainting!).
I know I felt ridiculous bringing up every single complaint I had, and there were many, and I honestly even wondered at times if I was a hypochondriac because it really does seem outlandish when you don’t know what you are dealing with. Now I understand my disease better and I can clearly see how it can affect every system and why I have symptoms from head to toe when I’m flaring. It also explains why the therapies for the different diseases I have been diagnosed with (endometriosis, IBS, migraines, seizures, etc) never worked and most, if not all, made me much worse with long term use.
It’s for this reason that Dr. Afrin believes there needs to be some sort of way to alert our doctors to the idea that all of these multi-system, inflammatory disorders and diseases and subsequent allergic responses to things like food, chemicals, exercise and traditional therapies (in many cases) may have a root source.
The problem is, no one really knows the mast cell exists yet, let alone that it can wreak such havoc in our bodies.
So it’s up to each and every one of us to help get the word out. I’m doing my part here by educating myself, my own doctors (even my dentist), as well as friends, family members and anyone who is looking for answers out there on the interwebs by blogging as much about it as possible. I encourage you to share what you learn, too. Together we can hopefully make a difference!
Make sure to join me next time as I get back into Dr. Afrin’s book, Never Bet Against Occam. It’s just a treasure trove of information on mast cell activation disease and I’m excited to learn all I can about it so I can pass it along.
Don’t forget to use the share buttons below and, as always, this is not medical advice, just my own experiences with this disease. If you feel like you have mast cell or any other disease, please see a doctor (and when you do, make sure to tell him all about the mast cell and MCAD!) :).
Click here to read part three of this series.