I was blindsided by what I believe to be MCAS following an allergic reaction to a glue that was placed in my forehead after what was supposed to be a simple embolization procedure. Prior to the glue, I was a very high functioning athlete and mom of 3 young kids who never got sick. Almost right away after the embo procedure I knew something was wrong.  It was day 10 when I paged the neuro doc because my face was swollen again.  That was the first day that I said “I am allergic to the glue”.  He wasn’t so sure.  But he put me on a short course of steroids, which wrecked my body!  I got the facial swelling under control with Fluticasone, of all things!  He still wasn’t convinced I was allergic to the glue (in total DENIAL!!) and said “let’s wait 3 months and then reevaluate”.

In the weeks following the glue I experienced a cascade of symptoms including extreme fatigue, lightheadedness, brain fog, orthostatic hypotension, facial swelling, hives, low blood pressure, palpitations, vertigo, heavy limbs, menstrual irregularities, lots of burning, itching, tingling, and shooting pains in my eyes and head and neck, nausea, stomach aches, and full body neuralgia. There was no way I was going to wait 3 months!

I found my way to the best immunologist I could find 2 months post embo.  I have decided that I am the luckiest person on the planet, because the Immune doc took one look at me and prescribed 10 cromolyn and 2 x allegra. In 2 weeks I was about 80% better.  I went against his advice and scheduled surgery to cut as much glue out of my body and completely resolve the initial AVM that started this all. The immune doc wanted me to wait because he knew I would flare.  I wanted the glue out of my body!!  One week before surgery my body opened up a hole and spit out a large amount of the glue.  Finally proof that my body didn’t like it. Who can deny spontaneous rejection!  

After surgery I was a mess again. No surprise!  The surgeon couldn’t get all of the glue out.  I crawled back to the immune doc to beg forgiveness for running off and having surgery.  He was super nice and continued to try to figure out what was going on.  At this point, I failed the pneumococcal titers test to some extent so there is at least some proof of an immune deficiency. This was the first blood work other than a very slight increase in IGE that came back positive.  Tryptase was 1.  

At this point I was so sick of everything that I stopped going to doctors.  Instead I started reading up on Mast Cell Disorders and pretty much realized that I have MCAS.  The problem is, I don’t get the feeling that my Immune doc believes in it.  He is the first to say that he is not a mast cell specialist.  I sent him Dr. Afrin’s book chapter and asked him to contact him for support. We also talked about sending me to a mast cell specialist (I am relatively close to Schwartz).  But with a tryptase of 1, I know there is really only one doctor to see…Casstells.  I also figured out that my Immune doc knows Akin and Medcalfe, probably from their time together at NIH.  

At this point the plan is to do nothing.  The immune doc wants me to try to cut back the medicine every few months. He said “I don’t think you have a chronic mast cell disease”. Despite being pretty sure that I do, and knowing that my body didn’t feel any different, I tried to cut back first on Cromolyn then a month later on allegra.  I want him to be right!!!   But I got sick again pretty quickly.  It will be a while before I try that again.  

It has been a long year. Finally...I can workout 5 days a week and don’t have to nap.  I am hoping that by Spring I will be able to kick up the intensity to the point that I can train for races again.  This is a long shot, but I am going to try!  My current symptoms are consistent and annoying, but I can ignore them.  I don’t know what the future holds, but I am going to try and live my active lifestyle for as long as I can.  

Thanks everyone for sharing their stories. I wouldn’t have figured this all out if you hadn’t!  

He Rx the drugs the very first day I saw him. By the time we got the blood work back I was so much better that there was no denying that the drugs were working.  Four months in I brought up cromolyn and he said I don't plan on keeping you on it indefinitely.  Then 10 months in he said I could cut back on the allegra.  It seems like he thinks this is temporary.  From what I have read, there is no temporary when there is a mast cell activation problem.  It is funny that doctors have trouble believing in MCAS. I mean here I am right in front of him.  Someone with normal tryptase levels, yet I have a mast cell problem.  I have to fit somewhere!!

Deborah,

Thanks for weighing in.  It makes me feel better to hear someone else say what you are experiencing is messed up and I think you need to see a specialist.  It is my mission to convince my immunologist that MCAS is real  : )

I am not dramatic, high maintenance, nor do I go to doctors unless I really have to. I have a very high pain tolerance and a "suck it up and get on with my day" kind of attitude. I am no wimp.  But after months and months of doctors either shrugging me off or giving up, you start to feel like you are just being a high maintenance internet hypochondriac.  

That being said, I am not really sure what going to Boston and getting a MCAS diagnosis will really change at this point.  The meds I am on work pretty well. Am I 100%, NO...but will I ever be?  I feel like I am just waiting for something to happen. To get sicker so that I can ask my immune doc to refer me to Boston.  Hopefully this will be many, many, many years down the road.  

mountain girl:
this is why forum's like deb's are so important. you finally put a term to my sysmptoms. never read it before. body neuralgia. will i'll be darn 9 yrs & finally a term for it. mine is just that with some stomach issues such as bloating & of course tiredness. my doc is an asthma specialist in fact one of the docs who tested xolair for the fda & he said it works for mcas but not for sm. also tested mastinib which is a drug that may work for sm, but it failed due to some impurities so will be back for trial once mfger gets issues resolved. besides regular meds was on gastrcrom for couple years, not much help. been on ketitofen from a compounding pharmist in washington state for over 2 yrs. it has helped me. pain & skin sensitivity are still there just not to the degree as before. take tramadol as am nsaids & opiod intolerant.
but each of us are unique & trial & error is our only path. so good luck on your journey.
mikev