Hi, my name is Heather and I am 43 years old.  About a month ago I went to see an Allergy doctor after having these "strange" attacks for over a year.  That is exactly how one doctor described these attacks, he said "That is so strange"...lol...like I was some oddity.  

These attacks would happen suddenly,  I would have severe stomach pain and my blood pressure would drop, I turned pale and started sweating, and my hands and feet start itching.  These attacks would last about 30 minutes.  The very first attack I had, I also flushed and broke out in a rash and I collapsed going down the stairs.  The first attack my family doctor suspected I got a bacteria from the fish I had eaten earlier that day, he gave me a benadryl shot and sent me home.  Then as time went on I had the attacks without the rash or flushing and the ER doctors all said I was having vagal attacks.  It wasn't until the rash and flushing resurfaced that the doctor suggest I see the Allergist.  I was almost certain I was having an allergic reaction to something, but I couldn't figure it out because one day I would be fine eating something and the next day I wouldn't.  I have discovered over the past month or so that I can not eat left overs, they cause me to go into shock.  I am staying away from fermented foods for now.  And I can not eat stevia.  The other day coffee made my mouth itch (never had that happen).  

The Allergist suspects that I have systemic mastocytosis and says these attacks are anaphylactic shock.  I was tested for carcinoid syndrome and that has come back negative.  I have not had a bone marrow biopsy yet, but the doctor has mentioned it.  He said either way my treatment will be the same, gastrocrom, singular, zantac, cetirizine, and hydrxyz.

I am very thankful I have my insurance, at least for now.  I have really spooked my employers and co-workers by collapsing at work several times.  It took months to get into the Allergist.  They seem to have become more at ease knowing that the medicines seem to be working, however, I was wrote up at work and told that I could loose my job.  Of course, after they found out I truely have a serious condition, they have said I have nothing to worry about, however because my job is seasonal and everyone gets laid off for a few months, I wouldn't doubt that I loose my job and they don't call me back.  I guess it remains to be seen.  

Strange thing, after reading about mastocytosis, I think I had it as a baby.  My mother has passed away now so I can not ask her anything further, but she told me that as a baby I was allergic to the sun.  She said that I would break out in hives all over.  Sounds like mastocytosis to me.  I guess it went away as I got older because I have no recollection of it.  

Over the years I have had some random symptoms and a lot of them.   I have never been able to take anything with codeine and have had a fear of moraphine (not sure why).  I would get sick after having iodine dyes for tests one time, and do fine the next.  I had an allergic reaction to a tetanus shot.  I would get light headed, pale, and feel like I was going to pass out, but these spells would be random and just every once in a while and go away.  About 13 years ago I started having very bothersome palpitations and about 6 years ago chest pain.  My heart has been tested and it is fine. I would go through periods of time I was ill and for no apparent reason and then periods of time I would be very well.   Sometimes I get these very sore spots in my abdomen like my lymph nodes are sore, but when I would tell the doctors this they always thought it was "strange" or would not really pay attention. I also get very itchy rashes in the winter.  

I have always known something was just not right, but never suspected Mastocytosis.  I am just not sure if this has been underlying all these years and dormant, or have I had this ever since a baby?  I don't know.  However, I am very thankful for this forum.  It is comforting having someone who understands and knows that your not a bunch of "strange" symptoms.  

Welcome Heather! I'm so sorry you have been dealing with this unknown situation for so long. If you've been reading other posts here then I'm sure you know that many of us have gone through rejection in some manner or another from multiple doctors. So we relate to what you are going through.

I'm not one of the better educated folks here when it comes to testing and the do's and don't's. I'm still learning (kind of at a snails pace). However, you mentioned something that I wanted to reply to.

'Strange thing, after reading about mastocytosis, I think I had it as a baby.  My mother has passed away now so I can not ask her anything further, but she told me that as a baby I was allergic to the sun.  She said that I would break out in hives all over.  Sounds like mastocytosis to me.  I guess it went away as I got older because I have no recollection of it.'
I went to see one of the Mast Cell Specialist's about a month ago and he asked me many questions about my health as a child. I've also read that it's not unheard of that symptoms may show as a child, go dormant so to speak and then pop back up again as an adult.

As for your job, try not to get too stressed out over it. Hard not to I'm sure. I just lost one of the best jobs ever about 5 months ago. Between doctor's appointments (which there were many), day's I couldn't make it in to the office (not as many as the doc appt but there were a handful or so) and a couple ER visits (one included an ambulance coming to my work to get me and it was within a classified area which caused a nightmare). Well all this and they let me go. I was crushed!!!! But on the opposite spectrum I was relieved because I was always worried and stressing about being sick and trying to maintain my job.

I'm not a doctor but many of your symptoms sound similar to those involved in a mast cell disorder. Save yourself some time and try a couple things: post what city you live in so others on here may recommend a knowledgable mast cell doctor. Contact this doctor yourself and see about going to see him/her. OR speak to your allergist (which by the way KUDOS to this doctor for thinking of Mastocytosis) and see if this doc would contact a Mast Cell Specialist to work together and figuring this out. There are some doctors who think they understand this disease but research is proving that it can be quite indepth on so many levels. For example: I mentioned to a gastroenterologist who worked as an instructor even at a teaching hospital that I was concerned about Mastocytoma. He was highly impressed that I had come to that concern on my own and he agreed he would test me. All he did was a 24 hour urine histamine 5HlAA test and a serum tryptase. All came back normal so he told me I didn't have it. That sent me on a year long search of doctor and doctor trying to figure out just what I did have. Then I got back on the mast cell train and now I have a Mast Cell Specialist in South Carolina (I live in Alabama) who is confident that I have some form of a mast cell disorder (more then likely MCAD-Mast Cell Activation Disorder) which is very tricky to find through tests. During that year that I was running all around lost, I acquired more symptoms and emotionally wore myself out. SOOO in sharing all this with you I just wanted to stress that even if it's NOT what you might have at least go to the best source of information to have this ruled in/out either yourself or perhaps with the help of your allergist.

Please stick around the forum, you will learn SO much your brain will pop!    Seriously, this is the most wonderful group of people here that can help you learn more about this disease and also they are great at lending a shoulder to lean on or cry on.

Keep us posted sweetie. Good luck!

Kim

Welcome to the forum, Baby!!   I hope we can help you somehow.

It sounds like masto to me too!!   Joan´s question of where do you live is good - there may be some doctors who know masto near you.  

Your attacks sound strange only because your doctor doesn´t understand the difference between an IgE mediated reaction and that of a direct MC mediated reaction.   With true allergy anaphylaxis, which is IgE mediated, the MCs, from what I understand, will completely open up and dump their contents and so it´s like a huge explosion.  However, with an MC mediated reaction it can be a partial dumping of certain mediators and this is why you won´t always show the full blown explosion that a truly allergic person will do.   (at least this is what I´ve come to understand but I could be off)  Yet with masto, depending upon the form of your MC disorder, you will have certain symptoms depending upon your genetics.  I never have any angioedema either externally or internally and so my throat won´t close up nor will I start wheezing!  Yet this seems to be what everybody thinks is anaphylaxis!!   Their training is in allergies not pseudoallergies which is why your doctor thinks it´s weird!!

Oh well, he´s just going to have to learn that there are other forms of anaphylaxis!

I hope he´ll send you to Boston and will work with those doctors for that really is the IDEAL thing to do!!!!!!

Lisa

The problem is that we see many patients have well meaning doctors who truly believe that they know a lot about mast cell disease. In reality, they simply don't. Mast cell diseases are considered rare because there aren't a lot of us on the planet. Likewise, the doctors who treat us are rare also in that there are probably under 10 in the US, if not the world, who really know and understand mast cell disease. The way I looked at it was that I was not going to waste any more of my life feeling ill.  Instead, I chose to go straight to the top and seek help from Dr. Akin. That was my quickest way to getting better, and it worked!!

Hello and welcome babyblues...

You've come to the right place for infomation and support.. The folks here are great!!

heather:
If your doc worked with a dr wedner at barnes in st louis, he would be well versed with masto. we have a group of about 10 of us in St Louis & we all go to Dr. Wedner. His real speciality is asthma. But if your doc worked as an intern to him he would have be exposed to a good doc & even if he's not doing research on masto he knows a lot. The problem we have here is he's getting close to retirement age. We have our differences at times but he has learned to listen & actually go outside his comfort zone as he knows I have researched a lot & through forums like Deb's know what's research is going on.
mikev

Starflower has a post on this forum that lists the tests to rule in or out mast cell disorders and the order in which they should be done.  It might be helpful.

You can always ask your doctor how much experience he has with mast cell disorders.