Mast Cell Issues??? Please help...

Allergies, blood and immune system
1

Ok, I'm needing some advice here. This issue all started about 5 years ago, in 2012. I started to feel cold, almost feverish, but no temp. I broke out in a rash on my arms, chest, groin, legs...etc. I felt run down all the time, dizziness after eating.

Fast forward to today, I take a load of supplements as well as a daily Probiotic. My symptoms have came and gone, but I still don't feel well. I don't get the rash anymore, but I do get some slight hives when I scratch my skin. It turns red and raises. I feel tired and drained all the time. My blood pressure runs high, and I'm on Metoprolol, so I have that part under control. I just found out about Mast Cell Disorders a couple of days ago, so I've been doing research. I get dizzy and fatigued after most meals, I have symptoms of POTS, although they don't appear much because of the Metoprolol now. My left knee gets stiff and gives me issues. And I do go through periods of shortness of breath. I have started taking Zyrtec, Famotidine, and higher levels of vitamin C. My dermatographia is gone since starting this regiment. My lymph nodes were slightly enlarged, but have settled down as well. My question is, what does this sound like to you? Is it possible that I've lived with a life threatening disease for over five years now? I'm still functioning and working 40 hours a week. What's going on with me?

2

i am a 54 year old nurse living with mastocytosis and mast cell leukemia after 2 rounds of chemo and a stem cell transplant. my condition is extremely rare and prognosis is not good. i was diagnosed in janurary 2016. i would suggest a whole panel of bloodwork ..... most importantly a serum tryptase and see a hematologist for a bone marrow biopsy asap. i hope this helps

3

Thanks for the reply. So, what are the chances I would have the same diagnosis?

4

Mast cell disorders share the same symptoms as many other diseases, so it's difficult to tell without proper testing what's going on with you. I have MCAS and your symptoms sound like the symptoms I get during mast cell degranulation. Google "What does mast cell degranulation feel like", read the article and see if it sounds familiar to you.

I work 80-ish hours a week, have a new puppy, bike commute, etc. but trigger severely to almost all foods, chemicals, additives, flavors, colors, dyes, preservatives, histamines, salicylates... anything I eat or is absorbed by my body. However, I am stable and can work/function very very well.

I started with Zantac and Zyrtec, plus a modified low histamine diet. I had an immediate response to this treatment (felt better), which is one of the diagnostic criteria for mast cell disorder. I was still having food reactions so I recently started Ketotifen, a mast cell stabilizer. It's been life-changing so far. I feel great.

My best recommendation is to find a doctor that's familiar with mast cell disorders: an immunologist, dermotologist, rheumatologist, hemotologist, oncologist, etc. Have tests run to determine mast cell activity/markers and eliminate all other causes of degranulation.

Mast Attack, a website, has a "Provider" series for doctors and an article on all the tests to be performed. Also check the Canada Mastocytosis Society for info about testing and doctors.

Yes, you may have had this your entire life and are experiencing the common mid life flare, or are being exposed to more triggers / allergens, but with proper meds and an adjustment in diet/lifestyle, you can reach a baseline that works better than what you're experiencing now.

5

I guess I just fear it being something fatal. I have an appointment coming up with my PCP soon. I just don't think I could've lived with cancer undiagnosed for going on 6 years, but I suppose I could be wrong. I usually just don't feel good at all. And sometimes when I eat certain foods, I cannot keep my eyes open. After I sleep, the feeling goes away. But I never really notice any triggers or whatnot...just usually don't feel good.

6

I agree, i think you may have MCAS. Mast cell leukemis is rather rare but I had many of the same symptoms especially around my period and they have been going on for about 10yrs. It was a God send to learn about MCAS eventhough I dont have a formal diagnosis (my tryptase was negative but my antihistamines have helped a lot). Go get your bloodwork after resarching to find someone familiar with mast cell disorders, apparently they are uncommon.