Hi.  I'd like to introduce myself.  My name is Lyn and I live in northeastern Wisconsin.  I am so glad to have found this site, after learning about mast cell related disorders from a forum on dysautonomia.   I've been ill for years, but able to manage my symptoms until cardiac symptoms prompted a tilt table test/other autonomic tests that demonstrated I have severe orthostatic hypotension (OH) as well as sudomotor and cardiovascular autonomic neuropathy.  

My debilitating symptoms are episodic and I've been able to identify certain triggers, such as entire classes of medications (betablockers, a dozen different antibiotics, pain meds, anesthetics, etc), fragrance, certain foods, hot temperature, menstrual cycle, showers, alcohol, emotional upset, and stress.  After spending 2 years of trying to identify the trigger of my OH and make solid progress toward improved health, my autonomic neurologist witnessed my severe flushing and sent me for a dermatology consult to rule out mastocytosis.  Tryptase was 2.5 and skin biopsy did not show increased mast cells.  I am now looking to MCAD to explain my situation.  i follow up with both specialists in the next month.  

About 8 years ago, I had been sucessfully treated by a renowned environmental allergist for systemic candidiasis, multiple food allergies, environmental allergies, and idiopathic anaphylaxis.  I was on H1, H2, PPI, food and environment allergen drops, nystatin powder for skin rash, and gastrochrom, and told my mast cells needed to settle down, which they did.  Meanwhile my symptoms changed and I was then chasing down endocrine issues, such as Hashi's and adrenal insufficiency, possible neuroendocrine cause, taken off some of those meds, and added others for various reasons (insurance coverage, cross reactions, new MDs)

Fast forward to late 2009.  3 back to back traumatic events left me bedridden, which were later diagnosed as OH/Autonomic issues, and been sorting out causes of my symptoms ever since. Every time I begin to make progress, something sets me back.  Pursued diet, supplements, stress relief, cleansing, and excercise when my other attempts failed.    

Time to revisit those mast cells.  Now that I understand the clinical description of anaphylaxis, I can say I likely have low level anaphylaxis reactions several times a week,  with numerous significant reactions and three requiring immediate epi/ambulance and ED care.  I am linking my GI evaculation, flushing/blotching, headaches, nausea, lightheadedness, to probable mast cell activation/degranulation episodes, since I have been able to abort/limit these reactions with H1 and H2.  I wonder what a full regimen could do for me?!  

Anyone have facial flushing and blotching on neck that does NOT itch?  Dermatologist told me my blotching is likely not typical hives, since histamine release causes raised hives that itch.  Told my skin biopsy showed significant dilated vessels, and they are calling my flushing some type of vascular leaking.  Anyone familiar with this?  

I plan to post specific questions in the very near future, but until then I welcome any advice or guidance you may offer regarding my specific situation.  I have been reading over this site and the web for weeks, and have become familiar with the general guidelines.  

Thanks for your responses.  
Lyn      

Hi Lyn!  Welcome!!

Sure, I get that blotchy rash when I'm flushing and nope, NO ITCH!!   That rash is just one of the ways we show we're reacting and flushing and it's not hives, it's a rash and it goes away as quickly as it comes.


I think you need to ask for a tryptase test for I have a strong feeling you've got MCAS or even SM but until you are in the hands of a specialist who knows what he's doing you're going to continue running around in circles!!

Lyn, I think that after all these years, you need to see an expert in MC disorders.   We'll be happy to give you the names of doctors if you tell us where you live.   Perhpas we know of someone near you.


I hope this helps!

Lisa

Thanks for the responses and kind words.  

Ana, thanks for the recommendations for the N Methyl histamine and prostaglandin D2.  Have not had them yet.  Dematologist said they were unnecessary if tryptase came back normal.  Didn't understand enough at that point to push it.  Anything special I need to know about these tests that would help ensure accuracy?  I see autonomic neurologist in 2 weeks and dematologist 2 weeks later.  

I need to ask specific med related questions, so plan to follow up with post in that correct partition.  

Lisa, my tryptase was 2.5, drawn while I was flushing, but with no  other symptoms at the time.  I live in Wisconsin, not far from Green Bay.  

Can anyone explain the difference between MCAD and MCAS?  Are these terms used interchangably or are they actually two different beasts?  


Lynda, what a small world.  Froedtert diagnosed me with Autonomic Neuropathy and OH, and I head back down there in 2 weeks.  I am now pulling together handouts on mast cell disorders.  Dr Barboi knew enough to send me for a skin biopsy to rule out mastocytosis, but is not familiar with the term MCAD.  Dermatologists there don't know what to do with me.   May I ask who you saw to get your dysautonomia diagnosis and if you recieve onging care at Froedtert?  Looking for my angle to proceed with mast cells.  I am new to this site, so wonder if there is a PM option here, in case you are more comfortable sharing details that way.  

I look forward to posting and learning more to help me navigate the world of mast cell disorders.  Thanks, Lyn  

Lyn,
  The skin on my neck I had biopsied that did show mast cell issues was like what you describe. My diagnoses for that was TMEP. My tryptase was 4, but if you've been reading this forum you know that doesn't rule out MCAS. I hope you are able to make some headway in a diagnoses. It isn't easy. Welcome to this forum. The people here have so much knowledge and are extremely kind. Cindy

MCAD and MCAS are the SAME THING!  This began when some doctors wanted to describe and diagnose those patients who were showing an activation disorder versus a proliferation disorder which is SM.  But there was no standardization between whether to call it a Syndrome or a Disorder.   It appears that they have settled upon Syndrome so it should be called MCAS.    This and SM come under MCDs or Mast Cell Disorders.

Make sense?

Thanks everyone,  I appreciate all your your sage advice.  I do plan to seek out the help of a expert, but first have to find a doc in my state who can help me get the probable diagnosis and order a few tests to get me to that point.  Do most have a allergist/immunologist to get to this point?  

Since reading up on MCAD, I am unsure what to take for my severe menstral cramping.  I was fortunate that I could muttle thorugh the last one, which means next month should be tough.  In the past I have taken advil or 550 mg naproxen, but while it stopped the cramping, it caused other symptoms. Never considered that the other symptoms were potentially caused my those NSAIDS.  What do others do/take for miserable menstural cramping?  I see my doc in 2 weeks and can ask for something then.  

I read something about supplements impacting mast cells on a You Tube video.  Is there some general advice here?  Thinking about resuming Magnesium, and if no blatent issues with mast cells, then will ask my MD about it.      

Joan,
Thanks for the tip on the low histamine diet.  Working on that already.  Pheo has been ruled out 4 times, including the plasma mets twice.  I did a 24 hr 5-HIAA at least 5 years ago, but it was not during a flushing episode.  Not sure if I should ask to repeat it.  Is the N Mehtylhistamine and prostaglandin test urine or blood?  I will have to look into those before my appointment, but if it's urine, wil definitly ask for 5-HIAA at the same time.  I'm assuming the above tests are better when in an episode?  

Goldie,
I am in Wisconsin, not Ohio.  Thankfully, we have a full autonomic lab in my state with awesome qualified autonomic neurologists, and a decent EP cardiologist, who treats those with POTS.  I don't have POTS, I have a different form of dysautonomia -- autonomic neuropathy, which involves my BP, not HR, as well as body temperature/sweating.  Thanks for the tip on Dr Grubb, I have read good things about his work.  

Lisa,
Thanks on the explanation on MCAD/S.  It was pretty confusing when I first began my research journey, and you've cleared up a major chunk of my confusion.  

Ramona,
Shocker and Leaker both, huh?  I wondered if my two previous biggie episodes, which required epi 7 and 5 years ago qualified me as a shocker.  Suspected the Leaker designation.    
I also itch in places other than my my blotching neck/chest.  My legs sometimes drive me nuts.  Previously I thought it was related to my blood pooling from the OH.  I have noticed much less of this with the antihistamines.  I have expired gastrochrom laying around and plan to make up some cream.    

I am currently prescribed 75 mcg Levoxyl, 40 mg bioidentical progesterone cream (days 14-28), 5 mg zolpidem, 1.5 mg melatonin, 50,000 IU Vit D weekly, 10 mg verapamil (on hold), 550 mg Naproxen PRN, EPIx2 PRN, cetirizine 30 mg (but taking up to 2 10 mg pills daily after previous reaction which I posted about in medications  section).  I have also recently added zantac/generic 75 mg to start and have taken a second dose during several intense episodes.  I will have to taper up on the zantac, since I do react to meds.  Been on the 75 mg for about 10 days so time to go up.  

Started a log.  Should have some decent data to take to my docs.    

I now carry EPIx2 (and have a few expired ones next to my bed), H1, H2, benadryl, PPI everywhere I go.  

The punch skin biopsy site included an area where I was flushing. Not even sure what they actually tested.  Need to follow up on that one.  

I truly appreciate the concern and advice.  For the first time in years, some of my goofy episodes/reactions/ and symptoms actually are making sense.  Thank you from the bottom of my heart.
Lyn    

Thanks Deb for your post.  This forum is giving me plenty of food for thought and helpful tools to move my care forward.  

I guess some of my posts aren't coming out as complete as they should be, and am sorry for that.  I try to be concise, but struggle since I'm inherently verbose.  So let me fill in some obvious blanks.  I have a fantastic brilliant autonomic neurologist at a top medical college in my state who I feel will be a great asset in getting me to the next level.  After my diagnosis with autonomic dysfunction, my care was followed by his NP, and we made great progress, but "something" would trigger me to go backwards by months.  I should have stabilized by now with everything I am doing to help my autonomic system issues.  This prompted an appointment with my neuro, and within minutes after observing my flushing/blotchy neck/chest and comparing to recent symptoms and past history, he suspected mast cell involvement and sent me for a dematology consult.  Although the dermatologist is most generous with his time, I can see that he provided less than stellar medical knowledge on mast cell activation as compared with what you all have shared about mast cell disorders.  I am seeking these details  from you all, so I can better understand mast cells and see how it applies to my situation.  

I will definitely pursue the help of the east coast experts, but from what I am reading in various posts here, I am not ready for that.  Looks like I need to cross a few more t's and dot some i's.  Suspect I need a bit more testing to rule out carcinoid, assess my state of activation compared to baseline, test for metabolites, satisfy my insurance documentation needs to push for out of state referral, and document my symptoms looking through mast cell "glasses". I have followup appointments in the next month and plan to use this time wisely to prepare for future consult with a mast cell expert.

Regarding my queries on magnesium, supplements, colorings, and pain meds, I was looking to guidance from here with plans to research them in the pharma world before discussing with my autonomic specialist.  I should have pointed out that I don't expect him to be familiar with mast cells impact (that's why I am looking to your collective experiences), although he knew enough to convert from a betablocker to verapamil talking through  what he thinks is going on with me.  I need for him to document in my medical record that I do not tolerate taking XYZ and why, now knowing that many drugs I have reacted to in the past are known mast cell degranulators.  This is a relatively simple way to connect my dozens of documented sensitivities to suspected mast cell involvement.  I can clearly see that my medical record needs to be transitioned from a heavily weighted neurology perspective to suspicion of possible mast cell disorder, and who better to provide that than my autonomic neurologist?    

I've worked in medical imaging and hospital administration for 20 years and am very careful with each step in navigating the system.   Seeing the wrong doc in a practice can shut out your chances of seeing the right doc in that same practice all due to medical professional courtesy.  Having blood drawn in the office verses the hospital can mean it is sent to a different lab, meaning different technique or standardized ranges, than your previous tests.  Medical imaging performed in NON-hospital offsite clinics will NOT be as equipped to handle anaphylaxis as a hospital based imaging department.  

I appreciate hearing about the experiences of masties and learning from your expertise so I can use that knowledge to better navigate my course through the mastie world, while continuing on the right path in the  autonomic neurology world.  I have learned so many things here, but most importantly that just because my tryptase is only 2.5 and skin biospy didn't show excessive mast cells doesn't mean I don't have abnormal  mast cell activity.  

I welcome your advice, expertise and experiences and appreciate your help.
Lyn  

You know Lyn, you say you´ve had this for years and seen plenty of doctors.    My question is, when do you decide when that last T is crossed and the last I dotted?   There comes a place where I think you can safely say you´ve dotted plenty and time to let an expert take over, don´t you?

I wish, oh how I wish, I could have bypassed all of this and gone straight to the top right from the beginning!!!   OH HOW I WISH THAT!!!!    I didn´t want to study all of this nor did I want to become my own investigator.  I´m a professor and principal and my area is education and working with children and their parents, not medicine.  If I could have save the tears, the frustration the money from the years of having to run around, without any other option but to run around I surely would have!!   This work belongs to doctors, not us, even though it can be very stimulating and rewarding.  If I knew then what I know now and had the financial ability to leave Brazil and go see Dr. Castells I´d be on the very next plane out of here!!!    

There is only so much head bashing a person can take!!!!!    I would think that you would have had enough of it too by now!!!

Lyn, if you have the means$$$  why would you continue insisting with the T and I dotting, it makes no sense to me when they can put the rest of those crossed and dots on there for you.  

Sorry, but this is just my own opinion and I hope I don´t upset you with it.   I´m sorry but I can´t help but get frustrated at times when I see how much easier it would be were I in the States and had the opportunity to go to the top!!   I see so many of you all with these golden opportunities and some of you don´t have financial issues to deal with and yet you think it´s too far, or too much of a challenge or whatever and stay stuck in your vicious cycle running around with local or regional doctors insisting trying to make the machine work.  It get hard to swallow a bit seeing such golden opportunities tossed out the door.   Makes me feel sad.

It´s like being offered $50,000 dollars and only taking a $5.00 bill!   Makes no sense to me!


Again, Lyn, I´m sorry, I´m not venting my feelings at you, it´sjust hard knowing I´d jump at the opportunity if I could.   I had an appointment set up to see Dr. Castells in January and had to cancell it sadly.   I just can´t get up there.  Even then, I´d be paying in cash for her consult and no testing could possibly be done cause I can only afford to see her and that´s it, but OH, FOR JUST ONE HOUR WITH THAT WOMAN!!!!!!!!!   She could move my case forward lightyears, at least that´s what my hope would be!!


So, please, reconsider still crossing Ts and dotting Is, for I think youre trying to reinvent the wheel - tons of work and often doesn´t work as well.


Lisa