Hello everyone,
With hand holding from Doozygirl I've unhappily moved passed denial and begrudgingly come to term with my symptoms.

Tomorrow I return to my allergist hoping for a plan towards solidifying a diagnosis.

My first real clue was hyperdermographism that resulted in a trip to the ER after touching bushes at Lowes. Throat closed, face swelled, hand doubled in size, hard breathing. This sent me to the allergist for the skin prick test for allergies. My entire back reacted, even the saline. Blood work showed I was not allergic to anything. The MD told me to take an Allergra once a day.

My tibial cartilage is torn along with my miniscus and when I found out the orthopaedic surgeon said to get a cortisone shot. Thinking I might get lucky, I chose to have it. Wrong choice. The reaction was near fatal. I went back to the allergist to see if I was allergic to lidocaine and mercane. Both were positive. Shocking!

I had a stomach biopsy for severe pain and was diagnosed with non-H pylori severe gastritis. I was given a prescription for 60 mg Dexilant as a PPI.

Several holter monitors showed I go in and out of right bundle branch block, atrial fib, pre-ventricular contractions.

I failed my sleep study. Hardly any REM.

Since teenage years I've had severe GI symptoms and was told I had IBS. My 'nerves' were shot since I was in 8th grade.

Most every symptom I have has me in stage IIB anaphylaxis within 20 minutes. It's awful. Even pulling weeds has my hand doubling in size within minutes.

Maybe once every two weeks I'm in stage III.

Dairy products are absolutely terrible for me. Alcohol doesn't bother me. But you should see me after plucking my eyebrows - for 2 days I can't go out in public because I'm one big unibrow-welt.

Look at me funny and I break out in hives.  

Life has been a living hell.

I've forgotten a lot but I know Doozygirl can help fill me in.

Sweet Tea,
Welcome to this site.  I am so glad you are taking this huge step. So many knowledgable people on this site have been unbelievably supportive and got me where I needed to be in my head before I could forge on.  I trust they'll help get you there too.  

BTW, Joan's advice is always spot on.  Soon, you'll see that Joan and others hold a wealth of expertise on mast cell issues.  You've come to the right place.

You might be salicylate sensitive, I'm always going on about salicylates, because it took me over a year to figure it out...that was a really bad year.  Salicylates come from plants-if you have mast cell issues they can make your mast cells degranulate.  I am very sensitive and have had a reaction to cut plants on several occations.  I try to avoid them!  Chemicals on the plants can cause issues as well.  
It sounds like you are on the right track.  Good luck!
a link you might find helpful:
salicylatesensitivity.com
Pam

Cindi,
My doc. told me since I have Masto  I am allergic to the world...however all my allergy test come back negitive.  I can eat something and go into anaphlaxis and be tested for it and it will be negitive!! So I think you should go by what you know and not what the allergy test says.
Many people with mast cell issues do not test positve for allergies!!
There is a comprehensive list of safe drugs and unsafte drugs for people with mast cell problems.  This list is on the Mastocytosis society forum  
www.tmsforacure.org/  under emergency catagory.  
I don't blame you for waiting on the knee, It is best to figure out what is going on with your body before surgery.
I do believe with the right doc you will figure this whole thing out.  It took me almost a year and a half to start to figure it out and get stablized.
Remember most doctors are not familure with Mast cell issues or mastocytosis.  I am lucky ...I went to an allergy/immunologist that has some knowledge of it, he has put me on mast cell stablizers and they have made a world of difference.  I have not seen the specialist in Boston, however if my doc didn't know about mast cells, it would be well worth the trip!
Good luck, the frustration is part of this whole thing, but remember the stress can make you worse, so take a deep breath and take one day at a time.
Did he put you on any other meds?
You might want to look up what we take, and what some doc. recommend.
Im not a doc and not recommending you take what I take but want to tell you  my list because I think you are very undermedicated for a mast cell issue!

Ketotifen- mast cell stablizer x2 a day
chromolyn sodium- mast cell stablizer X4 a day
singulair (dropped this a few weeks ago)
zyrtec-antihistamine
(2)zantack x2 a day-antihistamine
clairtin-antihistamine
atarax-super antihistamine

This is a work in process and has taken about 4 months to get stable and when I cheat and eat things I shouldn't my "bucket" overflows.
hang in there, we know how you feel!
Pam

Sweet Tea, I think I know what´s the core of this situation of your and the vast majority of us Americans at least go through this.  Sweet, I´m American but I´ve been living in Brazil for the past 24 years so I´ve had enough time outside of my culture to have a better view of my culture and this helps when it comes to seperating issues as to how we have been raised and how our cultures influence and train us to think and respond.    Please don't mistake me, I'm not doing any bashing or putting down my upbringing, I'm only saying that our cultures have a lot as to influencing how we think and respond.  

There is an excellent book by Dr. Paul Brand who wrote about his work with leprocy patients - he was perhaps the highest authority surgery wise on these patients and was a pioneer in helping to open up more understanding of their disease without the stigma regarding it.  Dr. Brand in his book The Gift of Pain speaks about pain and how important it is and also as to the cultural viewpoints regarding pain.  Dr. Brand was British but he spent a good part of his life in India and towards the end was based in the States.  He died only recently so his book is very relevant.  Anyway, Dr. Brand addressed how the American people look at pain very differently from the Indian Culture and where we are petrified to feel any pain and need all kinds of medicines, the Indians were different and could endure great pain with really very little difficulty and then when he put his British culture into this he saw the middle of the road "European" attitude and thus ways of dealing with it.

Well, this was very enlightening for me for I saw certain attutudes of my own and saw the Brazilian attitudes and this really helped me understand better and differentiate things.  Another book I read, the Cultural Code by a French Psychologist Clotaire Rapaille wrote about the psychological cultural differences between the American and French people as a means of showing how their cultures influence the marketing processes and their ways of emphasizing the cultural differences in order to sell more products.   In Rapaille's book he says that the American culture looks at doctors as "Heroes"!  Nurses were seen as "mothers"  and Hospitals were to be feared and places to die in.   This was very impressive and helped me understand a great many things about my own viewpoints as to doctors and also why I don't have the same viewpoints as Brazilians for they TOTALLY distrust doctors and the entire medical establishment, whereas we Americans are just the opposite.  I've struggled with this for years for I couldn't understand why my friends and family here in Brazil were so distrustful, but in learning how Americans view the medical establishment, this helped me to understand Brazilians much better.  I had thought it was just me, but it's not, it's my people!

So, what I'm saying here may help you to understand your own reactions.

Sweet Tea, we Americans look at our doctors as our Heroes, or in other words, they are supposed to have ALL the answers and we look at our doctors as the ultimate authority in what is wrong with us.  So, when our doctors disagree or contradict one another or even get it wrong, this totally undermines our faith in them for we put way too much faith in their having the answers.   I can't tell you how floored I would get when my doctors would do this - they'd either get it totally wrong saying it was all psychosomatic, or they'd get it half wrong saying that there was something wrong but they didn't know what it was.  This would totally floor me time and again and my reactions would really upset my husband because he's Brazilian and he never expected the doctors to get it right.  He thought my reactions overboard!  It was only after I read these two books that I began to see that my upbringing and culture made me look at doctors as the ultimate authority and that they all are supposed to know!   And my having doctors in the family didn't help any for they were put on pedestals!

You're reaction is my own several years ago and I'm trying to help you see that you're expecting way too much from your doctors for you have to realize that they don't know it all.  When you are dealing with the suspicion of a very rare disease you can't expect average lower level doctors to know what to do even though it may be their area.  You also can't expect them to be able to know how to diagnose it for diagnosing a disease is the hardest part of dealing with a patient!  If you are going to find answers, you must recognize your doctors limitations in their capacity and knowledge of what to do.  This doesn't mean that they aren't good doctors, they are only limited and when you put too many expectations in their capacity, you are really being unfair for you are burdening them to give you answers that they haven't the means to give.  

You must recognize your responsibility in your health care and that means recognizing the limitations of your doctors and seeking out higher authorities who can recognize the disease.   So, for now, forget about these doctors and move on to the higher authorities we've told you about.  They are the ones who need to take a look into the suspicion for masto and they are the only ones who can really say what is going on.   After you get your diagnosis, then you can return to those doctors and they will be able to deal with you better.  Diagnosis is the hard part, treatment is much easier once they know what you have.

I hope this helps!

Lisa

Joan, it took me a while to see that when it boils down to it, who is responsible for my health is NOT my doctor, but is ME!!!   Learning to see that our doctors are not really the person who is responsible is not an easy thing to do and it was the running into too many dangerous situations with clueless doctors is what forced me to see that if I don´t take that responsibility, I´ve got nobody else to blame but myself!


Lisa

Thank you for your kind words. I'm struggling. My grandmother just passed away on Sunday after my parents gave me a, 'oh, by the way, your grandmother is in hospice with 4 days to live and she has breast cancer. She doesn't know." The funeral was this week in NJ. Today I'm wearing both round and linear welts and just want to cry. Sorry to vent. I'll be ok. Oh, and during this my allergist called to say my blood work is positive for histamine.

Patience my new friends, whilst I gain my sea legs and I promise I will see the experts.

Cindi

I am also sorry to hear about your grandmother.  What a heartbreaking thing to have happen at any time, let alone when you are working through your own health issues and many unknowns.   I hope you can begin to heal soon.  

I just wanted to add that my allergist called me "the most non-reactive patient"  he had every encountered, yet I appeared to be reacting to everything.  And, I also had a serious reaction after brushing up against a plant and, like Pam, I am sensitive to salicylates.