Thank you Lisa.
I have wanted to write more to encourage others to seek a mast cell expert or at least a Dr. who understands mast cell disease but I have been so ill since I have gotten back from SC.  I am sure the lengthy trip has something to do with that although every thing went amazingly well.  I am not sure if this should be posted here or somewhere else and I can't think straight to figure it out.  sorry.........

I am glad you wrote about damage to our body.  I had such an awful night last week after I got back that I had my husband call 911...(I woke up out of a sound sleep at 3:30 a.m. and couldn't catch my breath). Unfortunately our phones didn't work as we are in the middle of remodeling and a wire must have been disconnected when they were working.  To make a long story short, after he went for his cell, I started feeling better so I told him not to call.

He wasn't even able to find a radial pulse.  He found a carotid one (obviously) but then I got the worst headache I've had in years.  I know if I go to the ER here, they have no idea what to do.  And since I don't have an official diagnosis as of yet, I am NOT being treated.  I honestly felt like I could have had a stroke.  

I did start on low doses of Claritan and Pepcid AC (the stomach pain is intolerable...the bone pain is just as bad).  I did call Dr. Afrin's office but he was out of town.  My next step is to call my oncologist who will be coordinating my care with Dr. Afrin and see if he has any suggestions.  I was completely amazed at how the stomach pain was lessened with just one dose of the Pepcid. I was concerned however that my pulse was irregular and I became really irritable after I took it and then fell asleep right after that.  This is wayyyyyyyyyy too complicated to understand!!

My question is this...how dangerous is it for us NOT to go to the ER?  I know that is an impossible question. I even called my primary just to get some kind of protocol to help me make a decision as to when TO GO and when NOT TO GO...no answers.  She told me to call SC.  I am stuck until I get an actual diagnosis and honestly quite scared. I haven't had that bad of a time for over a year.

Dr. Afrin showed me (on his desktop) the hundreds and hundreds of chemicals, their reactions and counter reactions that can happen when our mast cells release mediators. I was stunned!  But it also helped me understand the reasons why are symptoms are so multifaceted!  

As always, I appreciate your input.  The more information we have the better decisions we can make for ourselves.  Thank you!

Hope you are well.  Take care........hugs, Lynda

Thanks for your help.  Even though I have seen him, I always worry about "bothering" him...that's just me.

I am going to write him because I feel like I am in a fight for my life today.  ugh..  I really needed the encouragement.  Thank you soooo much!!  

Take care!!

Lynda,

GET THAT SILLINESS RIGHT OUT OF YOUR HEAD!!  Dr. Afrin is YOUR DOCTOR and he knows what he´s doing!!  WRITE AN EMAIL NOW!  Explain to him what happened and ask him for his directions as to what to do!!

I´ll bet you anything that he will say, GET TO THE ER RIGHT AWAY if that happens again.   Think about it clearly Lynda, your husband could not find a radial pulse!!!!  HOLY COW!!  Do you need it to get much worse than that????   This has totally freaked out my doctor for she too ahs caught this with me and it freaked her out!!  And she's a masto specialist too!   So, you bet your life that you are NOT doing well and that YES you need IMMEDIATE ATTENTION!!!   You need epinefrine for your BP has gone so low that it's affecting your heart's ability to deal with everything!!  You also need to be lying flat out when this is going on!  

Write to Dr. Afrin, ask him to send to you an email with his letterhead with instructions for the ER doctors and then PRINT OUT SEVERAL COPIES and have them on you, in your car, with your husband, etc so that no matter where you might be, you've got doctors instructions WITH you so that you can go to ANY ER and get appropriate attention.  Also, make sure that Dr. Afrin's cell phone is printed on that paper so that the doctors have a means of reaching him when in doubt.  You also need the very same kind of letter from the doctor who has agreed to work with him for the ER needs a LOCAL doctor they can refer to as well.  This way you can RELAX and feel PROTECTED!!    

Yet, if this kind of thing happens again, even before you call for the ambulance, get that bottle of Benedryl and start swigging sweety for you are needing immediate help and if you have the Epi pen - USE IT!!!  Remember, it takes time for the ambulance to reach you and if you are in such a state as that by the time they do reach you it could be too late!  Taking that Epi is what can save your life - ASK RAMONA!!  You are in denial and that's why you didn't respond to the situation - WE ALL DO THIS!  It's a very NORMAL response to not want to really believe that we are in such danger, for our healthy brains don't want to accept that we are really so very sick.  This is a normal, healthy psychological response in that we fight to keep a normal life and due to that fight we don't want to recognize and accept that we are indeed living with a chronic disease which can be life threatening.  But, what is not healthy is to continue fighting against the reality of what we are living with.  Also, you've got to recognize that this is totally unfair to your family for they have to live with you getting so very sick too!!

This is why you've got to stop denying the reality of your situation and do what you must, which is go to the ER when you're in such a state as that.

Now, Lynda, I'm not calling you on the carpet, for I too just recently went through one of these and I fully recognize what's involved there.  Often, we are so sick that our brains are not processing it all properly and so we stubbornly refuse and are even incapable of recognizing what is going on.  We really need for our families to TAKE OVER from us for our minds are not really capable of judging this situation properly.  The brain fog is a DEFINITE FACTOR!  So, this is where you need to have a really good conversation with your husband and let him know that when you are so sick that you're just not really able to call the shots, that you need him to make some decisions.  Yet this is also when you need Dr. Afrin to spell it out clearly for the both of you as to when to recognize the time to run to the ER!!   We all need this help for we're unable to recognize exactly when we are in serious trouble!!

So, this is something that Dr. Afrin can spell out for you, Lynda and you need to ask him to do this for you, seeing that he is now your doctor.  Don't worry about a closed diagnosis yet.  You don't need that in order to be properly treated.  I'm sure he can help you with this as well.  

As far as your suspicion of it being the trip, I'M CERTAIN OF IT!!  So, keep a really low profile for a couple of weeks until your body can fully recuperate and you may need to up your antihistamines until things calm down for a while.

I hope this helps!


Lisa