Hi Summer!
I am soo glad you finally have that diagnosis! You are just beginning to piece this whole puzzle out... the first step is what do you think you have, the next and most important is testing for exclusion to know the definite truth and having that REAL answer... the next is making a game plan to keep those masties quiet and well behaved.. then for me, its about weighing how to revamp how I live my life to be more at balance with my limitations and keep a positive attitude.  

I would caution anyone thinking about desensitising to allergens to be very careful about this--and make sure it is done with your masto Drs approval...some people can do it just fine, others react bigtime.. be careful and safe  

PS never go off your meds for allergy testing. A doctor who asks that doesnt understand mast cell diseases, we stay on our meds!!

Hugs,
Ramona

Dr. Butterfield, at Mayo in MN, has done a lot of research and has had some success in masto patients using aspirin.  But, I don't think that changed the fact that some people can't tolerate salicylates or aspirin, which contains salicylates.  Hope you'll proceed very, very cautiously if you decide to go ahead and do the desensitization.

There is a quick desensitization that is done in the hospital, but I haven't heard whether it can be done on mast cell patients.  I do know that very few allergists will even give immunotherapy to people with mast cell problems.  Mine only agreed after I told him I had already been taking shots for 15 years when I was undiagnosed.

It couldn't hurt to get in touch with Dr. Akin or Castells about how safe the process would be for you.

Hi Summer!

I'm sorry I've not had a chance to chime in here recently, my sister is visiting and I'm really overloaded and stretched to my limit so I'm going to have to try to pop back in here perhaps tomorrow afternoon.  I did want to say, however, that I'm glad that finally the torture is over in that you know what you are working with at least!   My doctor, once she saw the high histamines result told me "Lisa, for me I don't need to see anything else, I know what you have!" and from that point on she treated me as a masto patient.  There's nothing else which will send the urine histamines up quite so high as that of a mast cell disorder even though other diseases do have histamine release involved.  This is why it's not diagnostic, but it is considered an indicator of mast cell activation so having at least this the doctors know for sure it's masto.  So, good for you, Summer, your major torture is over!!

Now, getting the rest of the answers is the challenge, but if you keep on pushing after these you will eventually find them!!

I'll talk a bit more tomorrow, got to crash now!

Hugs!

Lisa

Hi Summerfields,


Oh babe I undersatnd .I fully expect some of my notes would say the same about me . I had one admission where they were told to watch me medicate . They thought I was over using my epi through anxiety . grrrrrrrrrrrr,

Many doctors , despite documented symptoms , are they wont beleive it until they see it

Hold on , you know the truth , you ahve your proof of allergies and reactions . My reaction to CT contrast was seen . It was actually a freind who gave me it .( CT radiologist )  In the days post they held my epi pens at the nurses station and this scared me . I had to ask my firned how I was immediately , 3 mins after drug . she said that I had been struggling big time . I knew and I know my body but in that moment I needed reassurance . Silly given ITU had been with me for 5 hrs the previous evening ( ITU outreach and anethatist ) .

I compleltly understand your concern and dismay at her lack of insight xxxxxxxxxxxxx and her lack of understanding on what this means to you . I don't know if you can ring Dr akin to check he got your email xxxxxxxxxxxxxx

I had a thought . I was talking to my docs about diagnosis first , so they thought I was anxious and focusing on a holy grail . Then I changed things . I started talking about my aim , which is stability regardless of my label . This ahs gained me better responses and even the doc on tuesday , by the end of our meeting , was going to look at my questions .

My label brings people believeing and i know completely how important being believed is to you / us . I had to explain to my doc tuesday that I needed a diagnosis , to be believed to help me my experiences with other doctors / nurses . In that i have had some impasses with docs and nurses who can't cope with me not fitting a box .

Do you ever stay home and manage reactions ?? Another approach is to prove your point .

I have ordered my 999 calls and paramedic paperwork . i dont know if you can do the same . xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

She seems to be a no hypotension , no anaphylaxis doctor . My reactions - anaphylaxis - is abdominal and airway . My BP will drop but my body compensates with very high blood pressure . My airway normally goes before my BP bottoms out . Though it has on 3 occasions . I passed out , but this was at home whilst I was on the phone , hence why my 999 (911) calls are important for me .

The other option is present with every swelling .  Then the paperwork will show "it" . Photos have helped me immensly xxxxxxxxxxxx

I would respond to the inconsistasies in the letter and challenge them , so the fcats are documented regardless of her opinion I have had to do this .

In the meantime could you ask your primary for a work up for autoimmune causes , pheaoctycythoma and carciniod as these things need excluding and the first magnifies existing problems and a pheao will give adrenaline release , which will make your pulse race , with no food connection . carciniod has a collection of food and drug intolerences similar to masto / mcas . carciniod has various hormones relased - histamine , adrenaline ,seratonin. + many others . It would be these chemicals thatgive you problems . A pheao , is on the adrenals and realses adrenaline , and various other hormones in a similar way to a carciniod .

Until you have a diagnosis , at presant you have IGE allergies and a collection of undiagnosed symptoms

The anaphylaxis you have to triggers mean that a diagnosis of idiopathic anaphylaxis would be likely . This is the old title for mcas .Which is still being honed down in terms of diagnostic criteria .

www.allergyclinic.co.nz/guides/56.html - has a list of things that need excluding , after carciniod , pheao and autoimmune conditions .

It also has that currently accepted diagnostic criteria . It is interesting to note you don't have to have hypotension to have IA .

When i was in your siuation I made a list of the things that needed excluding and got tested for them all . you may have to go to different doctors for their speciality if your primary looks confussed .
Autoimmune - endocrinology
thyrod - T3 T4 and autoimmune antibodies - hashimotos thyroidosis
adrenal - adreanl antibodies for primary addisions
Lupus - ANA , compliments

Pheaoctrocythoma - Urology or endocrinology
24 hour urine collection for
Cateclamines - andrenaline and nor adrenaline

Carciniod
24 hour urine collection for 511HA - seratonin derivative
Bloods - chromotaogranin a

Immuno
Heridatory angiodeama
compliments - c1 c3 c4

I also got tested for :-

myesthenia gravis IGG condition ,because my airway was so bad

Myloma - bone cancer which can cause increased IGE or any of the other immunglobulins - IGG , IGA , IGD , because I had back pain as an early symptom and high IGE with no obvious IGE allergy , even on testing

Infection :- hepititis , HIV , ( pure caution as i had been tested 4 months earlier for a health care job )

Endocarditis - sweats and shortness of breath on exertion

All negative

I hope this helps
Josie



Please dont lose faith xxxxxxx

many hugs
Jose xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx