View Full Version : possible mast cell activation

12-01-2013, 04:57 PM
For the past 20 years, I have had frequent post nasal drip/sinus problems which quickly triggers reactive airways. I have had frequent rounds of antibiotics, short burst prednisone, inhalers, nebulizer meds etc. I have had four or five allergy scratch tests over the years. Three years ago, I had sinus surgery which helped for two years. Unfortunately last November symptoms came back with a vengeance. I had constant sinus infections, sinus inflammation and bronchitis. My local ent tried all of the tricks in her medical bag and referred me to an ENT at Mt. Sinai in NYC. I had blood work which showed high anion gap,IGE,ANC,RDW-CV,ABS mono, CRP , compliment 3&4, and low MCV,MCH. The ENT felt that there was some type of inflammatory condition causing my symptoms. I was told to see a rheumotologist, infectious disease doctor and a specific immunologist. Subsequent blood work showed markers of inflammation were sky high but I tested negative for all of the rheumotological conditions (lupus, scleroderma etc etc). By the time I saw the immunologist, I was a mess. Two weeks later, I was admitted to the cardiac unit with a large pericardial effusion with a liter of blood drained. Since the effusion was drained, I still have been dealing with pericarditis which has caused tachycardia, elevated blood pressure and palpatations. I am on two medications to control the pericarditis and heart rate problems. Markers of inflammation are still sky high. The immunologist feels that I am dealing with mast cell activation syndrome. The most frustrating thing is that this condition is sometimes hard to diagnose when, as in my case, number that measure mast cell activation are normal. I am on a mast cell nebulized medication, antihistamine, etc and once again got the sinus problems followed by lots of wheezing. Today, I was put back on antibiotics and prednisone again. I am beyond frustrated not having any definitive answers. I feel as if I am just putting out fires as they occur which is unfortunately quite frequently now.

12-06-2013, 07:24 PM
I can relate , I was Dx with ME- Mastocytic Enterocolitis over a yr ago. the symptoms are from my head to toe. I never have a normal day anymore. It has truly affected my whole life. I have got more info thru the internet, than any Dr. i've been to.

12-15-2013, 05:31 PM
Believe it or not, I am now on my third sinus infection/reactive airways in 7 weeks!!!!!!!!!!!!!!!!!!