HI There, my name is Jane. I first joined this Mast Cell Disordere site in mid-December, but then it moved, and now I am finally getting back in touch.

I started having what we call"episodes" about 1 year ago, right after I started my new job.  A highly stressful job, but seriously most every job I have ever had has been stressful, so I m not certain why this is starting now???  I am 44 yrs. old.

Mastocytosis is new to me -  I started having what I call "episodes" this past May, they have been pretty regular ever since. Unfortunately, the severity of them seems to have gotten worse.  It really is such s very strange ailment/disease.  I am not certain if I definitely have it yet, but it seems to stump a lot of Dr.'s.  I feel like a science project ...

When my symptoms or episodes hit, they usually hit me pretty hard!  Now that I have had about 20-26 episodes the past 11 months, I can recognize the warning signs.  I get about a 5-15 minute warning ... when I first start to feel some symptoms coming on.  It's pretty horrible - unless someone has seen a person go through an "episode" they probably would not understand or believe, all the symptoms hit at once!  It is crazy!

I am glad they ruled out carcinoid syndrome - because I would not want that either.

My symptoms usually start with a slight bellyache and churning in my stomach (I often hear it gurgling away).  Then I notice my palms start to itch first, and sometimes the soles of my feet too; I feel a little warm & get flushed in my face, and sometimes my lips swell.  After 5-10 minutes - I know it's coming, and I need to find a bathroom and bucket immediately.  Then all hell breaks loose ... I am sure you know the details.

The 1st time this happened, I thought I had food poisoning, the next week it happened again, I wondered, hmmm - what's up with my stomach - did I eat something bad?  Well, then it happened a 3rd week in a row - but worse ... terrible abdominal pains set in, my heart started to race ... I was dizzy & sweating, started to vomit, had difficulty breathing - all while driving. I pulled over, I even called 911 because I had not idea what was happening to me. The episodes are pretty violent - I start with the diarrhea, then vomiting kicks in, by this time I am sweating and very hot.  I get light headed & fell dizzy, and need to be very careful when I stand up.  Sometimes, I get tingling in my extremities hands and lower arms, feet and lower legs - and my hands start to contract and form what look like "lobster claws" - I literally can't ' open my hand flat, my fingers get constricted.  I am now pretty weak, and trembling or get the shakes.  I also break out in hives, and am itchy all over my body, arms, legs, trunk, back, chest, even my head & scalp. Once the purging has subsided, I try to make it to my bed to lie down - completely exhausted, then the chills set in and I start to shiver and teeth chatter, as I am curled up wrenching from terrible abdominal pains & colon spasms. My episodes can last anywhere from 45 minutes to 2 hours.

Are these the same type of symptoms you all get as well?  How in God's name am I suppose to manage my life - this is crazy!  

I was tested for carcinoid syndrome, with the 24-hour urine collection, they did blood work, an MRI, colonoscopy, endoscopy and took biopsies, the first time ... everything seemed to appear normal.  I had a brief break from my symptoms for about 3 weeks, and thought, maybe it just went away.  My GI doctor, wanted me to get allergy/food tested - so I finally got that done, when the episodes started to flare up again.  I reacted to quite a bit of items they tested me for (1/3) - although, I have never had "significant" food allergies throughout my entire life. I knew to avid, some things like cantaloupe & melons & cherries. Other than that I was fine.  

I have always had terrible seasonal allergies, and very allergic to spring pollen.  Very bad right now!  As a child I did get hives occasionally and was once rushed to the ER once because they were actually "giant hives" and started to close my throat.  I am also allergic to sulfa drugs, penicillan & contrast dyes.

Well, before I went to see the allergist, my Dr. friend actually mentioned Mastocytosis" to me ... so I read a little about it and went on my way.  I asked the allergist if he was familiar with mastocytosis, and he said, yes, but stated it was very rare, and that he had never seen a case in over 30 years of practicing medicine.

My allergist seemed a little stumped, and he reported back to my GI Specialist, who also seemed confounded at this time. They ran some more stains with my biopsy - and that's when they noticed the increased count of mast cells. My GI Specialist originally said he tested for Masto. And ruled it out, along with Celiac, Crohns, Carcinoid, IBS, colitis etc ... but evidently, the pathologist did not run that special test to masto test - so it was actually missed the 1st time.  The allergist asked the GI Specialist about Masto - which is when they ran the pathology test a 2nd time.

I am so sorry for my rambling & lengthy email.  How do you handle managing the symptoms of this disease and working a full-time job?  

I am in sales, and do travel, I have to meet with customers, take planes trains & drive ... not to mention, I work for a very demanding manager, I have put in 16-18 hour days - sometimes even longer.  It is very stressful ... Hmm, come to think of it, I had my 1st episode, the end of my 1st week after I started this job - yikes!  I missed a meeting once, and she was not happy - did not even want to tell her the testing I was getting done, because I was afraid, she might let me go.  She has already made comments, about being able to depend on me - what if I get sick?  Naturally, that just added to my stress.  

I was just wondering what it is like for you?  How does it affect you, and to what degree and how often do you get these episodes.  I am taking anti-histamines, and an H2 Blocker.  Soon to start the some Crom drink stuff.

Does anyone know what causes the extra mast cell in our bodies - why do some people have excess mast cells?  Have I/we always had an abundance of mast cells, or did they just pop up, out of the blue?? Does stress or anxiety, increase their growth factor?

I feel like a freak of nature ... I am fine one hour, and then I get hit with this horrible "episode" where my body just freaks out.  Because my whole body reacts.  In between episodes, I have noticed eye pain and headaches, and I am very, very tired - I sleep almost the entire weekend.

Is this normal - Do you get this tired?  

I honestly would really love to hear your story ... now that I have dumped mine on you.  Again, I apologize, I am a little overwhelmed and scared at the moment.  They have ruled out Mast Cell Leukemia, which is a blessing!

I am now scheduled to get a Bone Marrow Biopsy done in about 2 weeks.   Not really looking forward to that.

Thank you for starting this forum 2 years ago, I am really glad I found it.

Best regards,

Jane B.  
jane.brady@comcast.net

Hi Jane,

Welcome to the group!

I want to focus on just a couple of things, because it seems like you're currently heading in the right direction to get a diagnosis.  (Of course, let us know if you have that bone marrow biopsy and your doctor wants to blow you off based on the results... no test can rule out a mast cell disorder 100%).

It sounds like you really do have some classic (IgE) pollen allergies.  That doesn't mean you don't have mastocytosis.  It's possible to have both.  It was also smart of you to figure out the cross-reactions from melons and other fruits!  That's not uncommon in people with severe pollen allergies.  Do you happen to know exactly what kinds of pollen you're allergic to?  Melon, for example, is a member of the ragweed family.  People with latex allergies can cross-react to bananas.

As to the question of working a full-time job... I do.  I don't know if it will always be possible, but for now I'm hanging in there!  It helps that I love my job (I'm a professor).  It's also flexible as long as I show up to teach most of my classes... plus I recently got tenure, which means that I don't have to worry about getting fired.  When I started having attacks they were just like you describe... hives from head to toe, vomiting, diarrhea, abdominal pain, extreme dizziness, tachycardia (racing heartbeat)... I also called 911 the first time.  I haven't had an attack like that for a while though, thanks to figuring out my triggers (and avoiding them as much as possible) and finding the right mixture/doses of medications.  Unfortunately, travel has become very hard on me... it makes me cringe thinking about all the driving and flying you're doing.  That would make me very sick!  In order to fly I have to take a bunch of extra antihistamines.  I can handle a very short flight by myself, but for longer flights (especially if I'm traveling to another country) I ask for a wheelchair.  It's the only way I can make it through.  Otherwise, I get headaches, nausea, flushing, hives... and by the time I get to my destination I'm a mess for the next two or three days.

Now that I'm feeling better I can work a pretty normal schedule... around 50-60 hours per week... but I have to pay attention to what my body needs.  Friday, for example, I wasn't feeling well... on Saturday I took a five-hour nap.  Thank goodness my husband took the kids out for a while, because there is literally no way I could have stayed awake any longer.  I really, really needed that nap!  I can't imagine working 16-18 hours a day.  Nooooo way.  That would land me in the ER in a hurry.

The more you let your symptoms progress into full-blown reactions, the harder it will be to recover.  It's much better if you can start medicating when you notice the early signs like a headache or a gnawing feeling in your stomach.  Are the antihistamines helping much?  If they do, that's another positive sign that you're moving in the right direction thinking "mast cell disorder."

Heather

Hey Jane,  

I just wanted to add a little something more.   When I said that I haven’t been able to figure out any triggers yet I meant food triggers.  I have been able to figure out some other triggers to avoid mostly just medicines. I cant really tolerate any kind of medications I break out in a rash mostly on my chest and back.  I can tolerate some Motrin for headaches but if I take more than 1 or 2 doses I will get a rash.  Some other things I know to avoid is Tylenol, Cough drops and Neosporin they all cause a rash.  I also have to avoid antibiotics, I went into shock after being on a round last year so I know that is a big No No for me.

Take Care,
Tracey

Hi Jane!
Just wanted to welcome you to the board! Youre among friends now, you will be ok, we can help. Can you tell me what meds you are on so we can suggest something you might need?  Those antihstamines are lifesavers... IF you feel you are reacting, grab one--the one that works the best for you, and take a dose immediately... Tell us a it more about you and how you are doing week to week now??

Butterflz here is a tip.. many of us can out food in our mouths and if we will react to it, our mouths will start to hurt or tingle.. That isnt 100% but it might help some to figure out some triggers
Hugs
Ramona

May 19, 2011

Hello Everyone:
Thank you so much for your replies, sharing your information & experiences and your kind words of support. I live in Boston, MA and am now a patient of Dr. Cem Akin, and one of his Fellows Dr. Anne Liu.  My GI Specialist referred me to Dr. Akin.  I am so fortunate to live nearby, it seems I am lucky to get on this diagnostic path as quickly as I did. Sorry this is such a lengthy post, some of you have asked about my history, meds. and BMB test.  

I did have the Bone Marrow Biopsy completed on 5/16/2011 this past Monday.  I was a bit anxious, but honestly it was not as bad as I thought it would or could be.  They only did a local, so I asked if I could take my own Lorazepam (Ativan) I brought it with me just in case.  I definitely recommend taking a sedative before hand, it helps take the edge off, and remember to take deep breaths too.

I was hoping I might be given the "twilight" sedation they gave me when I had the colonoscopy & endoscopy; but evidently, that is not a common practice.  As they were taking my BP and vitals, I was told they would only be using a local anesthetic (lidocaine), but I could take my own Lorazepam (Ativan).  So I popped (2 pills) really quickly, they were about to start my BMB procedure in about 10 minutes!!!  I only wish someone had told me I could have taken it before hand, they said they saw it in my RX records, and assumed I would have taken it anyway. I probably should have only take 1 pill vs. (2) I was pretty loopy by the time I got home, but I did sleep well!

Post BMB I am still a little sore, if I move or sit a certain way.  As the lidocaine & Ativan wore off, I felt some pain the 1st afternoon & evening.  But after a 2-3 days, I am feeling much better, no trouble walking at all. I believe the test results may take approx. 2-3 weeks.  I have a follow-up appointment on June 10th to discuss the results.
My "episode" & medication history: My symptoms started about 1 year ago.  But, as many of you have said, you also noticed some "aha" moments along the way.  This time last year, I also started a new job, which is very stressful.  In the beginning I seemed to have about 1 episode every week; some weeks I had 2 per week, and one week I had 3 episodes. My GI Specialist put me on cyproheptatadine (antihistamine) to help address the flushing & hives.  Oddly, because I also have acid reflux for about 20 years, I also sporadically take omeprazole (Prilosec) or ranitidine (Zantac) profylactically, before certain meals or if I might have a glass of wine (acid).  I have always avoided spicy foods, as they do not like me!

The initial testing I went through sounds very similar to what many others experienced. My Dr. wanted to rule out the most serious concerns first ex: carcinoid & pheochromocytoma, eventually they came to suspect mastocytosis or MCAD.  Actually, my former boyfriend is a Dr./Surgeon ... he was the first to suggest the various diagnosis, even before I went to see my own the Dr's.  I was actually grateful he saw me experience several of these episodes.  They are so strange & violent I do not think the Dr.'s would have believed me, had no one else witnessed the episodes.
Being a Dr. my boyfriend noted the drop in my BP and tachycardia. Physically you could see, the flushing, hives & swelling of lips, along with the itching of the palms of my hands & feet, vomiting, diarrhea, sweating, sometimes my hands constricted tightly and looked like little lobster claws. After the purging subsided I was very faint, light headed & dizzy, it was difficult to stand let alone walk.  I can relate to having to crawl to my bed or the floor.  Then the chills kicked in, and I would tremble & shake, Sometimes the flushing, hives & itching was worse than other times. The stomach cramps were always horrible and extremely painful, I would curl up in a little ball; moaning in agony, wondering when they would stop, finally I would fall asleep. Most of my episodes did happen at night, and at the end of my workweek. Sometimes, at the end of a very stressful day, or in the early morning hours, if I did not have much sleep the night before. I am a 45 year old female, and my episodes do not correlate to my cycles.

My 1st visit was to my PCP, who referred me to the GI Specialist, who was so stumped, he had discussions with oncologist & immunologists, and then referred to an allergist for food allergy testing, although they had already eliminated celiac disease. Fortunately, they ruled out carcinoid syndrome & pheochromocytoma, crones, ad IBS. Evidently, my health & episodes were an interesting topic. If I called my Dr. after I would have an episode, he always returned my call quickly! After 7 months, they knew something was not quite right, but had still not figured it out.

Mastocytosis came up as the next possible diagnosis.  I mentioned this to the allergist, who at 1st replied, "Oh, mastocytosis is so rare, he doubted it could be that.  He stated had never even seen a masto. case in over 30+ years of practice. The very next day, my allergist called, and said he noticed something "different" in my allergy tests and the results of the other procedures. He would be contacting my GI to review & "re-run" a pathology test with a special stain, used to identify the mast cells.  My GI Specialist, originally said he ordered this special stain back in July, but the pathologist did not run the correct stain or test, and it slipped through the cracks somehow.

Three weeks later both Dr.'s called me, and explained the new stain identified an abnormal mast cell count (higher than usual) from my colon/duodenum (soft tissue biopsy) and referred me to see Dr. Akin, a mast cell specialist.  Dr. Akin, switched me both H1 & H2 Blockers BID (2x's daily): ranitidine 2x150mg (Zantec 2x150 mg) and cetirizine 2x10mg (Zyrtec 2x10mg) and suggested for sudden onsets, I take Benadryl liquid. After switching to both H1 & H2 blockers, and being more compliant, I did notice an improvement in the symptoms along with fewer episodes. However, I was still having episodes, now maybe 4-5 weeks apart, so we moved forward with the BMB. Not as severe as before, except for 1-2 occasions.  
I still get some bad stomach cramps, I often hear a lot of gurgles & noises and get diarrhea; intermittently I have some itching spells & get flushed. I have been prescribed Gastrochrom, (mast cell stabilizer) and have a full box, waiting for me if needed.

I also do a lot of reading & research on my own - maybe not such a good idea!  I have noticed over the past several years, every spring, my seasonal allergies seem to worsen, and now I think I understand why.  I have these extra mast cells floating around my body! It effects my eyes, nose, throat, and even my ears get clogged. I go through so many boxes of tissues, from sneezing & a runny nose, I should buy stock in P&G (Puffs).  Sometimes I feel like I want to claw my eyes out & scratch my face off! I take Zaditor eye drops and Nasonex or Flonase for my nose & sinuses.  I feel like a walking pharmacy!  

Stress, anxiety and emotional upset seem to be my main triggers, these days.  I am also allergic to sulfa drugs, penicillin, contrast dyes, and certain fruits (especially melons & cherries).  Effective Monday, I am on a medical leave of absence (FMLA) for several weeks, we will see how things progress.  Unfortunately, I am afraid I may need to find another job or boss, as this is a really bad situation.  I am working with HR, and thankfully, they are adhering to & supporting my Dr.'s request & recommendations, even if my own manager would not.

How do you deal with this disease, its symptoms and how it impacts your life?  Stress, will always be a factor in our lives, right?  What have you done to address or remove the stress factors & triggers?  Do you meditate? Have you had to completely change tour life-style?

As this past year has progressed, and I read & learn more about Mastocytosis and MCAD. I often wonder, why or why now, or what brought this on???  Is it the Mastocytosis making me feel so tired and fatigued?  I always seem so exhausted especially at the end of the week, I sleep most of my weekends away, and hate it. What is this "Brain-fog" people talk about?  I seem to be forgetting things & forgetting conversations or discussions, I lose track of what I was doing, even the simple things, which is pretty frustrating.   If that is "brain-fog", I am afraid I have that too.  

I have so many questions, and want to understand more about Mastocytosis or MCAD. Why do some people have excess Mast Cells, or why do these mast cells "behave badly" and form odd shapes?  Do these mast cells just start growing more rapidly at some point in our lives? or have the been building up over decades? Could the mast cells related to seasonal allergies be a pre-curser to identifying systemic mastocytosis?  Does stress, anxiety & emotional upset effect/increase the growth rate of mast cells or just impact the degranulation process of histamine?

The reality is this; I am actually very lucky & should count my blessings.[/highlight][/i][/b]  As I sat in the waiting room at the Dana Farber Cancer Institute, waiting for my name to be called to get my blood drawn, I saw so many people who are seriously & terminally ill.  Many have lost their hair and do not have the strength to stand or walk.  I realized, I might have some rough episodes but I am actually the lucky one!  I thank God I do not have what they have.

Jane, you mention that stress is a major trigger for you. This past year I found my part time job was becoming a major source of stress for me, and was considering whether I would have to give it up, as it was impacting my health so badly. It wasn't so much the work itself, but the politics. The business has grown from a small 2 doctor office to one with 12 doctors and multiple nurse practitioners and lots of support staff. This change has not been easy!

Finally I bought myself a little MP3 player, and loaded it up with music and audiobooks that make me happy. I take it with me to work, and plug in when I am able, and use it to screen out much of the stress and craziness. I find that certain music really calms me down, and now I find I am not thinking about work politics when I leave.

There is good medical evidence that certain types of music can change body chemistry and calm brain waves. I figure it is my own personal brain wave training.