I am preparing for my visit  to the physician at Duke several people have talked about on here.  I could use some help because i've had some problems working with Drs on the past.  One allergist point blank told my general health practitioner that he thought i had mental health problems when i showed up with complete medical history records.  

My medical
Problems started about 6 months after i was born, and has gone on throughout my entire life.  For a while after my tonsils were removed i imkproved, but allegy shots had no impact.  During my adult life, i was treated again with allergy shots which made me so ill i was not able to get out of bed for nearly a month.

So here we go my symptom list.
Flushing, followed by a tight chest and difficulty breathing.  Occurs nearly always with alcohol, heat, sunlight exposure, and exercise.

-- feel bloated all the time.
-- racing hr
-- joint pain
-- headaches /sometimes incapacitating
-- inability to think.  I 'm a neuroscientist, sometimes I cant function well enought to domy job.
--the difficulty breathing,and inability to exercise are the worst
--I would buy the alleregy thing,  but avoiding allergens doesnt help; plus my symtoms start 24-48 hrs after exposure.
-- I'm clumsy.  I drop things a lot.
-- my blood co2 is low
-- my hands and feet get really cold and splotchy
-- oh yeah, sometimes taking antiinflammatories make it easier to breath.
--Prednisone always helps, and my gp has been open to starting me on the antihistamine regimine (i cant tolerate ephedrine products, so i cant take any decongestants)

I use an airway clearance system which helps clean the phlegm out of my lungs, and use a saline wash in my nose which has also helped in mainatenancd.  Its just, Im in hell, I'm 40 years old.  I have no life besides my job because i'm so weak and tired all the time.  I had to give up flying because every flight triggered an event.  I leak, it just goes on and on.

What other things should i be thinking about?


I care less about a diagnosis and more about getting some measure of
control.  The list of diagnostic tests was so helpful.  My doctors have
done some, but not all the tests.  My pulmonologist want to do a lung biopsy, but i think aspecialist in this area may be more helpful

Okay,  my tests so far have been really sporadic because the doctor's havent been really on the ball.  For example, I requested Ige, Iga, Igg, and they did the tests wrong twice.  

Cbc - normal?
Vitamin b defficiency
Asthma test negative
Exercise test normal, except that my blood c02 was low before the test started
Apnea test negative
Cardio tests normal
Allergy tests positive at 48 hrs, by one more day After that I reActed to everything on the panel
I did some thyroid tests which were normal
Ige came back very low -- twice
I'm going to have to compile all this stuff...in fact I think I already have somewhere.
Some of the tests were performed incorrectly, and my docs know nothing about mast cell disease.  My gp told me only children could have it.  So i didnt even think of it for a long time.

Hi Jaxx,
First, I want you to get a tablet of paper and write down every possible question you can think of to ask him--and take notes when he answers you. That ill help some. Look at the thread where Heather posted different tests for masto and related conditions.. ask for those if he doesnt suggest them himself.

Now I want to talk to you about whats going on with you,. Im very concerned about you for a few different reasons. I see a vit b deficiency---do NOT take any for the time being.. I forgot why (blame it on my brain fog) but there is a reason, vit B isnt something masto people should take.

The symptoms you listed apply to almost all of us, you arent crazy and you arent abnormal.. youre normal for a masto person LOL..

I am VERY worried when you make a statement likel Quote:
 Most of us dont react with one allergy or psuedo allergy--BUT--it all adds up during a short time period and when your body hits that final straw, you will react and crash. You CANNOT ignore your allergies OR your triggers either! That is exactly the wrong thing to do and will put you in harms way very quickly. Once you start reacting it is difficult to break that cycle from repeating and worsening if you dont keep to the low histamine diet very strongly AND take some extra antihistamines--whichever ones work best for you.

When I first learned I had masto, I thought I had many food allergies--what I realized as I became smarter , more educated about masto is... food is only a part of what triggers us to react and I was adding my triggers like the national debt clock races LOL... Chemicals, preservates, aged foods, fermented foods, odors, dyes, additives, mold, MSG, heat, cold, dry air, iodine, fish, wool and itching clothing.. soooo many things will make us react.

You MUST keep a diary of food/acitivity/how-you-feel every day to even start seeing the pattterns of your own reactions and the triggers that caused it.  You might react in 24 or 48 hours--but most reactions are much sooner than that. Youre over looking some things Hon.. right now, be suspicious of almost everything until you start getting a handle of what causes you problems.

Taking steroids for a short period of time to let your body rest is a good thing--as long as it is a short time and you taper off slowly--NEVER stop quickly, it could cause an adrenal crisis and sudden swelling in the heart and brain. Now about the other "anti-inflammatory" meds.. those are Nsaids, all of them and most of us cant take them--they are usually huge triggers for us too.. so dont pop alot of those!!!

Please let us know how your appt goes.. we are wishing you lots and lots of luck and we do care
Hugs,
Ramona

Thank you so much for your advice and support.  It is a very bad time right now, and talking to people who understand is helping so much.  I've been having a few good cries, which I needed to do.

I take melaxicam, which is an nsaid.  I have major inflammation problem, with bone and joint deterioration in both knees.  I can manage the pain with vicodin (which is not my favorite solution), is there another way to control inflammation without an nsaid?  I've had 5 surgeries on my knees, and the inflammation is a killer.

Don't worry about what I said about avoiding the allergens not helping.  I had this awful interaction with my allergist over a couple of sessions where i would do every single thing he said scrupulously, and i still felt the same.  He would then take me through my days, and conclude I must not be telling the truth and that I should work harder.  If i avoid every allergen on my list, i stlll get symptoms.  I still avoid them, but i now
understand that they are only a little bit of a bigger picture.

Also, but not least, i bought the eye drops that folks suggested on here.  My opthamologist refers to my eyes as "dirty eyes", they are always oozing something.  It is impossible to wear normal contacts because they become coated in whatever crap is in there.  Ive been warned that if I get one more infection, i could go blind.  As you can imagine my hygeine is desperately good.

 Long story short, for the first time in my entire life i've experienced- day without eye or headache pain.  No pain from glare or "strain".  I didn't even know that i had it unti it was gone.  I walked outside without sunglasses, and didn't feel the need to scrunch my eyes or puke.  Then i had a good cry.  Areally good cry.