Summer
Your symptoms sound almost identical to mine. I struggled for 14 years.  My allergist called it idiopathic anaphylaxis and she was right but could not really offer me any information about it. I went to Northwestern in Chicago and received the same dx. They didn't seem interested in offering me any info about it so my allergist finally sent me to Mayo in Jan and they dx MCAS (Dr. Rank). Both myself and my allergist were thrilled as I finally have a dx and she has something to learn around and a Dr. to work with. She is also connected to Dr. Akin so she is working with him to learn.  Don't give up hope. Can you consult with Dr. Rank at Mayo since your already a patient there?

Thanks to ALL of you for your suggestions, I appreciate it.

I adjusted my "allergy pages" yesterday a bit and started a new notebook for Emergencies.  I had titled them previously as "Known Allergies and Adverse Reactions", which was sort of a compromise on what they were, or were not, but as I learn, I renew my vocabulary.

Thing is, I DO prove Ige allergic to many substances -- which doesn't matter, when I list them, the docs' eyes glaze over and I start to see the look of grave doubt.  Sometimes I hear about it in very insulting words.

From the time I had a terrible case of Mono at 18, I started testing positively allergic to nearly everything I was tested for.

But whether they are "proven" or not, I am just too generally reactive, there's a War going on inside my body for whatever strange reason.

I'm glad to hear feedback on Singulair, particularly since even Dr. Weiler had expressed concern over it causing depression, and there are the reports of violent personality changes, nightmares, and suicidal thoughts, like any of us need to add that to our piles of trials.  

I think I will, for now, consider keeping it for the worst times or approaching procedures.  Which I have coming soon.

I've been surprised to find articles on the net connecting many of my long-held "syndromes" to Mast Cell Disorder.  I can't believe I didn't run into this "root" long ago.

I've been struggling with all of these following syndromes / "mysterious maladies", some for decades.

Sarcoidosis (began in 1999, presently in remission)
Chronic Fatigue Syndrome (since 1985)
Fibromyalgia (since 1985)
Multiple Allergies / Chemical Sensitivity (Since 1971)
Interstitial Cystitis (intermittent)
TMJ (since 1980's)
Chronic Diarrhea (since 1991)
Heart & Blood Pressure Irregularities, syncope (since 1970's)
Dizziness (since 1970's)
Stomach Pain (since 1990's)
Bone Pain (since 1980's)
Flushing (since 1980's)
Intolerance to Exercise, and Heat (since 1980's)
Reactions to Medications, Dental Anesthesia, and Contrast Dye (since 1980's)


Would someone kindly send me Dr. Akin's email address?  

I'll send you his email in a PM. You really should eliminate that word, Allergies, from any of your information UNLESS you have had allergy tests that proved positive to those things. While it is easy to tell a restaurant waiter that you can't have any garlic because you are allergic (when in reality, you aren't allergic at all; you simply know it is a trigger for you), you don't want to tell a doctor that you are allergic to something because it will confuse them.

Thos of us with mast cell disease are essentially NOT ALLERGIC to most things. I have 3 allergies: shellfish, mold, parsely. That is it. Yet, I am HIGHLY triggered by food. Most foods trigger me, but I am not allergic to them at all.

So, be careful when using that term so as not to confuse your docs.

Hi - welcome summerfields and I hope you get some help.

Message for JOAN - I react to a million things too and was interested in what you said about MALABSOROPTION. Could you explain more - how could I get a test for this? If I can't take drugs (I can't) how can i treat it? Thank you so much....

Hi Summerfields ,

please understand I am not trying persuade you or dissuade you in any subject . I am just giving you my experience to work with evrything you ahve heard As , as adults it is our job to make decisons based on the knowledge we have

I am triggered by many foods 5 page list , typed , enviriomental triggers , emotional stress, the works . I also ahve had docs who have not beleived my angiodeama status , putting me at risk .
There is too much for me to put here

Inhaled sulphite gasses , in alcohol or in sugar will cause anaphylaxis in me .

So I completly understand your concerns about triggering

I am sulphite triggered as sandi mentions . So I held off the epi pen .I spoke to the cpmpanies and my pharmacist assesed my anaphylaxis risk against sulphite risk .

They found my anaphylaxis risk to be higher as sulphites , when in the body , quickly bond with oxygen to become sulphate - a harmless substance , even to me (I can't say for eveyone as I don't know ) .

So for me , with my anaphylaxis going to full symptoms , as circulatory collapse - from low bp , tachylardia and eventually low BP that your body can not compensate for is my  reality .

Everyone has a stage called compensatory shock :- This is what I wrote about shock in a book I am writing about my experiences .

Shock
I thought I should take a moment to explain shock . Shock can originate in several places .
1.      From infection -  causing blood vessel to get porous  , from bacteria toxins . As a result fluid moves out of blood into tissues . septic ,
2.      from fluid loss - blood or lymph -  bleeding , anaphylaxis                                 hypovolemic ,
3.      due to poor heart function -  causing blood pressure to drop                            cardiogenic
4.      Due to trauma to nervous system - Stroke , spinal injury - Neurogenic
5.      Emotional :- emotions trigger nerve responses which cause symptoms .

Shock has 2 stages :- compensated and complete

In compensated shock the body has had an assault / loss of fluid / heart not working / kidney failure . It responds by using its resources to compensate :-
      Temp up - to encourage innate immunity to step into action
      blood pressure up - to push blood at edges into central space to perfuse organs
      Heart rate up - to push what fluid is present to the internal organs
      Flushing -  in response to temp / bloods pressure
      Breathing fast to make blood more alkaline as infection and fluid loss and muscles working without oxygen makes blood acid and this stops vital actions of proteins ( enzymes ) vital for daily function
This can continue for an indeterminate amount of time . This is dependant on :- rate of fluid loss , physical fitness .
After a period of time the body exhausts its resources and this the leads to :-
      Temp down - hypothermia
      In response - blood sugar down as stores in liver can not be accessed by the body when cold
      Low blood pressure - due to limited circulating volume
       Giving - Blue edges , feet / legs
      Central blueness ( cyanosis ) face , lips , tongue .
      Low pulse / cardiac arrest - due to heart muscle not getting enough blood
      Confusion / unconsciousness
      If not rectified - death

So Histamine , compliment and other triggers can cause the process of fluid movement from the blood to the tissues - which the body sees as lost fluid . It also opens blood vessels , lowering blood pressure

The first aid is always symptom based until the cause is identified . Then the treatment for that is a priority . Medical teams are well versed in the management for shock . For Anaphylaxis this is :-
      EPI PEN - to reduce swelling in airway and lungs  and stop fluid leaving blood , bring blood pressure up, increase pulse
      Into vein :- Anti histamines -  to stop actions of histamine  - piriton , ranitidine
      Into vein - high dose steroids - 200 mg - reduces swelling , opens airways
      Breathing - oxygen - keep oxygen high for central organs and brain
      Breathing - nebulisers - drugs in liquid , breathed in -  stops wheeze , opens airways
      Fast fluids - to replace fluid moved to tissues as when it has it is lost from the circulation.

I seem to know when I am in well and a reaction is going to make me very poorly xxxxxxxx
I passed out 3 times bacause I didn't think I " needed " an epi pen . When i realised it was late , luckily the action of the pen bought me round .

I also understand the concern with the heart . I have had nearly 40 adult doses of adernaline now and I was seen by a cardiologist . My heart is fine . They reassured me that adrenaline does a job , and then its processed out of your system , in 6 hours total . It does not go on causing tachycardia etc . if you have that it is residual histamine , prostogandin effects .

I also felt i could " control " my reactions and " decide " when to ahve it . It was my way of controling my life in some small way when I felt like I had nothing left , no job , car , money , my kids were scared of it all .

But as I said I learnt my lesson . If its not a biggie I will orally medicate . but  big reactions , means Epi pen for me .

I am a staff nurse and I was petrified the first time I had to give myself it . But it was ok . My need to breathe and not collapse was bigger than my fear xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

If I take it when I know I need to , it often works before I have full throat close I may need more and other meds . But it gives me time to get an ambulance to me .

I am not saying you are feeling any of this . I just thought I would share my perspective .

With meds , singulair and ranitidine in particular I am doing better and shocking less .

I hope you have contact with DR Akin soon hugs
Jose

I just want to add an important note to Josie's post...

Josie accurately described how the body shuts down in a "shock" situation (thanks Josie!).  The important thing to recognize, however, is that not all anaphylaxis leads to shock... that's only severe anaphylaxis.  This results from one of two things:

1. Angioedema of the airway

2. Loss of blood pressure, resulting in cardiovascular collapse

Severe anaphylaxis is definitely a life-threatening situation!  I think it's a bit unfortunate that we use the terms "shockers" and "leakers"... it might give reassurance to "leakers" that they're not in danger of going into anaphylaxis under ordinary conditions, but it might also give the impression that "shockers" are constantly going into life-threatening shock.  Not true!!  I've been in anaphylaxis dozens of times... I've even been to the ER twice... but my reactions have never been so severe that I went into true "shock."

It's very important to understand that there are MANY gray areas between "fine" and "life-threatening shock."

Heather

Hi Heather ,

I completely understand . I too do various versions on a theme , I have had well over 150 reactions , about 20 % are Epi level , all are anaphylaxis - only 20 % anaphlactic shock .

I think it helps to see the fire in full to be able to learn what our bodies do but ultimately we have to give it the respect of fire and not take chances guessing Regardless of how we are treated sometimes paramedics and docs would rather us Epi'd and well than not Epi'd and very sick / dead .

I use everything available , not just drugs to help me stay well xxxxx But sometimes I just need the big guns for a big problem that all my other tricks have not worked on

Sometimes we need supermen dumping water in the fire not just a bucket of water to put the fire out xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Much love and respect to all

Josie