Hi Lyn,

  Even if your doctor is brilliant in his field, you're showing many signs of a mast cell disorder, and that's not his specialty.  The situation is very clear and no other documentation than what you already have is necessary in order to see a mast cell specialist.  They'll ask you the details they need to know.

  In the past, you've felt as though you needed to research and self-diagnose when the medical community couldn't account for all your symptoms.  But now you're past that point.  If I were in your situation, I'd get my insurance referral and see a mast cell specialist as soon as possible, as Debbie recommended.  It took far too long for most of us to be diagnosed, and one of purposes of this forum is for others to avoid that.

  The experts will not only diagnose mast cell disorders, but also will tell patients which, if any, symptoms are probably not due to an MCD.  You'll get a lot of information and can ask the all the questions you're thinking about researching when you see them.  They will answer them as well as give you a treatment plan that should relieve many, if not all of your MC symptoms.  It may need to be tweaked over time, but you'll be on your way.

  As for lifestyle changes and learning to recognize food, medicine, and environmental triggers to help you stay well, that's an ongoing process, and it can change over time.  Once you become aware of the basic lists of foods and meds to be avoided if you have MCAD  and which are well-tolerated, you'll have a basis for figuring out how to feel good on a daily basis.  We can help you a lot with tips on that process, but it's important to get the information that the experts have to offer you first.

 Hope you don't think I'm being harsh.  I'm not saying to go away, but rather step back, take a deep breath, and trust the experts.  And, when you call for your appointment, or when your doc does, ask them what testing they'd like you to bring with you.

  Good luck and let us know what happens!

Sounds like progress Lyn. If you can, I would try not worry about whether they'll see you as a suitable candidate. If they need more done to see you , they will tell you or your doctor. I agree with others in that you don't need to wait for that.

If it was me I would have my doc send them a consult for advice for your current situation/testing/treatment in the meantime, while working on getting in to see them yourself, if possible, which would obviously be ideal.

Hang in there! You are doing a good job trying to help yourself!

Lyn,

Again, please don´t take my passion incorrectly. My own challenges with my case isn´t the only thing that empassions me when trying to help others.  It really upsets me how very hard it is for the great majority of us!  If it were only the process of diagnosis which were so hard, perhaps that could be overlooked and understood, but its the fact that we go through so much stupidity and frustration and even abuse from doctors and the insurance process and all of the rest to even get treated!!  It´s just not right!!   And now, in your telling your story and your challenges, it can´t help but to infuriate any one of us!!  It should have to be this way!!!  You have no idea of what Ana went through at the Mayo and it makes me HOPPING MAD (too bad this face doesn~t hop up and down!)  to see this for IT´S WRONG!!!    

You should not have to bear the emotional scars you do and neither should I!  None of us should, but we do.  This is why we try to help those who are still struggling to get a diagnosis go into the right directions.  We´ve learned some things here and as a group, sharing amongst each other we´ve found some ways of short cutting all the grief.   When there is a known local doctor who is up on the processes, we let everybody know, but when there isn´t then we also come right out and say it.  

Yet, Lyn, there are some cases that we´ve learned are just more impossible than others.  You´ve got one of those cases, dear.  This is why you have us standing up trying to get you to hear us for we don´t normally talk so strong with others.  You´ve been going around for  YEARS, beating your head up against doctors and the entire process and it´s easy to see that you are battle fatigued and just at the end of your rope!  Your continued hope for an answer is what carries you, but sometimes it just comes to the point where you´re ready to break down and quit and many of us here have been on the very edge of that.  

This is why I spoke so strongly with you, not to give you a beating too, but to help you see what you do indeed have available to you and what you can do.   Going to the Mayo would be just one HUGE MISTAKE and further disappointment, Lyn and thank goodness you didn´t get in there for they would never recognize your 2.5 tryptase!!  

Lynn, I can assure you that if you were to write to Dr. Afrin, he would gladly take you on that 2.5 tryptase.  I have no doubts!!!   You would have trouble getting into Boston due their being overwhelmed.  However, I think that if you were to personally write to Dr. Castells, she would indeed consider your case.  Although they have their requirements, she knows that the 2.5 tryptase of yours indicates and well knows that you may not show other markers than that.  She is who handles MCAS patients and with that trytpase of 2.5 you do show some MC activation.   The tryptase is low because the MC burden is low, but the fact that it is above 1.0ng means there is some activation going on.  

So, don´t lose hope or get discouraged, but be grateful that you did have that problem with your getting into Mayo.  

In fact, rethinking this, it may be better to go to Dr. Afrin instead of Boston because Dr. Afrin is a hematologist.  Your having shown signs of the carcinoid tumors and having had a suspicion in that area means you need to still rule them out.  Since you couldn´t do this, you need to have this done prior to going to Boston.  Dr. Afrin knows how to do this and look at MCAS.  If he has any questions, he knows the right doctors to find answers with.  

So, don´t get discouraged, we know how to help you and where to send you and those doctors who will finally cross the Ts and dot those Is once and for all!!!


Lyn, one last word....

You really are to be commended for all of your hard work!!  You´ve learned a great deal about your body and how it´s functioning and what´s wrong.  You´ve done an excellent job of trying to find the answers and you should be very proud of your success so far!!  It´s taken tons of pushing and hard work and we know how hard it is, Lyn, so we also know how to recognize this in another who has gone this same route as we have!!!   GOOD GIRL!!!!  You really should be PROUD of YOURSELF!!  

Hugs!

Lisa

Thank you everyone for the explanations, guidance, kind words, and support.  I really appreciate it.  I would have sent this message sooner, but had a significant crash yesterday, which took me down most of the day, hours, then in a groggy drunk state the rest of the day.  Today, I feel hung over.  Before then, I began to pull my medical records together and began drafting an email letter to Dr Afrin, which had to stop when I crashed.

I don't even have a mast cell diagnosis yet, I feel at peace for the first time in a long time, because I can actually see a glimmer of light at the end of this tunnel now.  So much makes sense now.  

And all of you helped get me there.  Ana, you are so encouraging and supportive.  Joan, you have such a calming simple way of coming back around and filling in the blanks, which got me to rethink my approach.  Lisa, those documents you sent were so helpful in clearing up some confusion for me and I learned so much on your posts on the political side of how these disorders came to be was especially insightful.    

After ruminating on all that, I could finally see the forest through the trees.  I now have a plan!!!  
With appreciation,
Lyn

Yahoo! A plan is key! You are to be commended for taking the time to find the site and fight for your health!

sorry you're worse, but glad you sent the email. Keep us posted!

Yahooooooooooooooo

SO happy for you

Hope your course toward recovery is a speedy one

Lyn, welcome to the group. I have TMEP just like Cindy. When you said dialated blood vessels, my ears perked up... Or I should say my eyes opened wider. Lol! TMEP is a sub type of UP. TMEP stands for Telangiectasia macularis eruptiva perstans. Telangeictasia's are small dialated blood vessels. TMEP is a hard diagnoses becauses many times there is only a slight increase in mast cells, so many times it is given as a differential diagnoses and clinical correlation is necessary. I would look into TMEP. I would also get a copy of your pathology report from the skin biopsy. I saw a university doc who told me I had a slight increase in mast cells and increased dialated vessels, but he told me it was telangiectasia's(dialated vessels) which he said was caused by heat and he told me the flushing,diarrhea, hives, joint pain, reflux, and all the food sensitivities had nothing to do with the spots and to eat whatever I want. Two months later within a two week period I got 2 new patches of hyper pigmentation and like 30 new mole like freckles spots, this was in the middle of winter. I got a second opinion and she confirmed my suspicion and even said it says on your path report a differential diagnoses of TMEP and how clinical correlation was necessary. I provided all the clinical correlation necessary, he just didn't wanna listen or maybe he just didn't know better. I also went back to the university to see a different dermatologist who has a knowledge of mastocytosis and she agreed with the diagnoses of TMEP. I tell you a this because TMEP is rare and hardly seen by most docs and it can be easily missed or overlooked. I Have different looking spots, some are more like freckles and moles and others are more of a splotchy red hive like spots that never fully go away, some days they are slightly there and other days my chest and neck and arms are flushed and splotchy but it does not itch. I do get heat hives and those itch.
Sorry this is so long but I just wanted to tell my story a little. It's very frustrating when you know something is wrong and doctors are telling you nothing is. What do your spots look like? There is more info on TMEP if you wanna read it, it titled TMEP info and it is under the general category and it's probably back a few pages.

Melissa