Hi All,
Thank you for reading my story. I am hoping to find others here with a confirmed diagnosis of MMAS to see how they manage their symptoms and in the end, anxiety related to having a fatal reaction.

I am 50 years old and in good health otherwise, though also have been diagnosed with hypothyroid (treated with levothyroxine). For most of my adult life I have had either sporadic anaphylaxis reactions, just hives, that I attributed to unconfirmed food allergies. I have also had a long history of contact dermatitis that would come and go. No big deal.

In 2009 I had an anaphylaxis reaction that started out as hives but then I had pounding in my arms and chest and some dizziness indicative of hypotension. I popped a bunch of Benadryl and Prednisone and was getting better by the time I got to the ER.  Follow up consisted of a full battery of allergy testing all of which was negative.  At the time, Dr Cem Akin was at Univ of Michigan and he convinced me to get a bone marrow biopsy that showed I had the c-kit mutation.  I did not have CD2 or CD25 on my mast cells but I had a long, 20 years history of elevated serum tryptase.  This prompted the diagnosis of Monoclonal Mast Cell Activation Syndrome.

I have kept a journal since to keep track of my reactions which until 2013 consisted only of period hives to varying extents with limited blood pressure problems that responded to benadryl.  Then last year I had a rapid onset reaction that resulted in syncope within about 15 min.  My wife hit me with two epi pens and I was conscious when the paramedics arrived and fine by the time I got to the hospital.  I upped my emergency meds to include prednisone and ranitidine and had only one flushing and uticaria reaction since that I managed with the meds until last month when I had a reaction that knocked me out in less than ten minutes after popping all my meds and getting one epi in. My wife hit me with another and again I was fine by the time paramedics arrived.

I have no known triggers except possibly NSAIDS though my reactions happen many hours after taking these.  My reactions are seasonal, I have never had a reaction from April through August, so I thought maybe it was a cold thing (I live in NY now but MI before) but my reaction last month happened while I was on vacation in Orlando.

Is there anyone here with confirmed MMAS??  Do you have similar symptoms??  Has it gotten worse over the years??  Obviously, my family is terrified and I wonder if people can die from this. I am going to try to get a consult with Dr Akin and my hematologist to see what they think but would appreciate opinions from the folks here.

Thanks,
Rob

Hi Deborah,

Thanks for the advice. There are some 2013 reviews on MMAS I could post links to if that is permitted (or upload pdf files).  These reviews also address IA so may be of interest to others like yourself.

And I am going to seek advice from Dr Akin.

Rob

Sounds good. Here is the best and most recent one from Dr. Castells at Brigham and Women's Hospital. Let me know if the link doesn't work and I can try uploading the pdf. There is a ton of useful info in here for anyone with a mast cell disorder.

http://www.clinicaltherapeutics.com/article/S0149-2918(13)00171-9/fulltext

Hi Rob,

I don't know exactly what I have, but I have the anaphylactic episodes.  I think I'm at about 20 now in the last 3 years.  I have been diagnosed with Mast Cell Disease and Eosinophilic Esophagitis, Raynaud's, and a heart arrhythmia.  I get very high b/p and heart rate, throat swelling, faintness, and tremors with reactions.  I take Benadryl and sometimes prednisone with reactions to help stop them.  I know that once I have a big reaction, I have to be very careful for the next few weeks, or I get in BIG trouble again.  I also have almost all of my reactions in November through March.   I hope you are getting the help you need and feel good Sarah