Diagnosis and Treatment (a comedy of errors)

You what?!?! (Sean-Michael in his Respro mask)

Today was a comedy of errors, mishaps and the like. Our cat has allergies and had a vet appointment before mine. I waited out in the car where hilarity ensued as people walked by seeing me in my mask and did not know what to make of it. We did not pack the wheelchair and somehow we forgot how to get to Scottsdale Mayo and drove 15 minutes in the wrong direction, traumatised post vet cat crying a large part of the time. Actually, after I pet her through the bars, she settled down and purred for the rest of the ride. But let's get to the meat of the story:

My Fellow Patient after the Vet (she was purring)

Today I was told that it is most likely that I do NOT have Mastocytosis as no abnormal mast cells, and not enough mast cells per area were found in my bone marrow biopsy. He also said it can never be ruled out 100%, as it can be hiding in the bone marrow i.e. missed during the bone marrow biopsy, or it could at any time happen that I move over into a diagnosis of Mastocytosis. Currently the most accurate label for what I have is a Mast Cell Activation Disorder. I had already gleaned as much from my conversations with his nurses, but Dr Lewis just got back into town and wanted to meet with me personally. He answered all the questions I asked, and I have more written down for the next visit.

In my limited and new understanding, Mast Cell Activation Disorder basically means the mast cells are over active. It is not contageous, it won't make you catch the "red hulk disease" as Nick calls it. It just means I flush, get throat swelling, itching, if I"m not on a lot of antihistamines hives, must carry 2-3 epi injectors at all times, pain, fatigue, etc.

Everyone has mast cells. Mast cells can put out various chemicals into our bodies and can be a good thing if they are behaving in a healthy manner. They put out histamine, prostaglandins, and more. They participate in the immune system and are most well known for their work attacking allergens, but in my body they are on overkill and instead of putting out a little bit of this and that as needed, my body gets flooded with thousands of more prostoglandins, hystamines, etc. than needed. You can learn more at mastcellaware.com

What this diagnosis means to me, is better treatment. Previously I was on 3 x 180 mg Allegra, 300mg Zantac, and Benedryl or Epi as needed. I was still reacting multiple times a day, tho only used my epi once this month so far, which is an improvement. Now we will try adding Singulair. Although normally used for asthma, it has been found to help patients with mast cell disorders, and according to Dr Lewis has relatively fewer complications than other options. I am relieved. I hope this reduces the frequency and strength of my reaction and allows me to gain back some foods.

There is still no cure, and no expectation of major recovery, though that sure would be nice and you can donate to TMSforacure.org to make that happen, donate while you shop, or see the Awareness and Fund Raising page here for other ways to help.

At this stage we are just looking for baby steps of improvement in my condition, and in 2 to 3 weeks hopefully I will see recognizable changes in that my allergy-like reactions to triggers (mast cell degranulation episodes) will be less intense and farther apart. Hopefully the ER staff at St Joe's will see much less of me nd I of them. I hope to need Epi less frequently and frankly not at all tho the latter is unlikely. I would very much like to gain back some foods as right now I have only found one food that is "safe" as in has not triggered me. 

Sean-Michael making zen art outside Mayo, Scottsdale

If adding Singulair doesn't work, we will move on to trying Gastrocom.
Some people with Mast Cell Activation Disorder love Singulair and get great results, some do not. Everyone is different, so it is a trial and error method of finding what treatment my body will like best. At a later date, if we feel it is appropriate we might try aspirin therapy to reduce the prostaglandins in my body, but I am sensitive to aspirin so the desensitization process is not something we want to do at this time. Sounds like a good plan to me.

So to sum it up, I have MCAD, I will be trying out Singulair for 3 weeks to see how it goes. I am to continue avoiding triggers as possible, and hope to add low histamine foods into my diet if Singulair ends up being helpful. MCAD is not contagious, not cancerous, and not currently curable. It is however more of an answer than I have had and who knows, maybe with Singulair I can resume exercise, build up my strength and get back out to the world more actively. In the mean time I will continue to update this blog, improve it's resources, and to make art every day be it a simple doodle, or something more. Because I am much more than my mast cells and so are you.