What should you do if you suspect you have (or are convinced you have) mast cell disease? From my own experience, by following these steps you should be able to get a diagnosis and proper treatment quickly.
(Please remember, this is not medical advice. Please see a doctor if you think you have mast cell or any other disease. Or just follow step 1 🙂 )
Step 1. – Find a local immunologist or a hematologist and look up their credentials. If he has graduated in the last decade or so, or keeps up with research in his field, chances are he’s heard of mast cell disease.
MCAS is a relatively newly named disease and still pretty rare so the newer the doctor, the higher the chance of them being educated about it (or at least familiar with it, like my doctor was) and therefore able to help.
Don’t be afraid to call the front desk and ask to speak to the nurse so you can ask them if the doctor treats MCAD or if they have even heard of it. If they don’t or haven’t, move on. Don’t waste time with a doctor who is unfamiliar because this is a very complicated disease and needs a qualified doctor helping you to treat it.
Step 2. – Know which specialists are nearby and which tests need to be run and in what order. Become familiar with what the experts are saying about the disease, particularly the testing process. Blood tests, urine tests and bone marrow tests may or may not be warranted. It’s important to understand the purpose of these tests for MCAS and mastocytosis, two different types or aspects of mast cell disease, and also whether or not they are recommended based on your symptoms and other variables.
Step 3. – Start tracking your everything, including your food intake and symptoms, using the handy Daily Activity Log (scroll down the page) the experts recommend. It will help you to see patterns and figure out triggers to remove/avoid. You can use the MCAD Diet Guideline to help you with sussing food triggers. Remember: this is a very long, difficult process. Be patient!
Step 4. – When you go to your first appointment, talk to your doctor (or their nurse) to see if you should try taking OTC Zyrtec/Zantac immediately to see if your symptoms abate (if they don’t recommend it). These are the first two drugs mast cell doctors generally recommend trying because they are an H1 and H2 antihistamine combo which and when taken together help settle hyperactive mast cells. Patients typically notice an almost immediate difference, sometimes a quite noticeable one, when they are put on both of these medicines at the same time.
Step 5. – Once it’s clear you have or your doctor strongly believes you have MCAD, download and print off the ER brochure and any other forms that may help you or your doctors.
If your doctor decides you need an epipen (usually 2) become accustomed to being prepared to spring into action at any time, following these 3 steps:
Use 1st epipen
Use 2nd epipen if necessary
Your doctor may also recommend using an “emergency” drug, like Benedryl, so make sure you ask them about this when you are working together on your MCAD treatment plan. You can refer them here, or better yet, to the Mastocytosis Society where they have information specifically for doctors.
If you take these first few steps, your diagnosis will (hopefully) go much more smoothly and hopefully you’ll be on the road to feeling (much) better soon.
Good luck! Remember, we’re in this craziness together.
xo Michelle Dellene