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Hi, my name is Patty (Read 4392 times)
PJC4562
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Hi, my name is Patty
07/03/14 at 06:40:38
 
Hi,
My name is Patty I was diagnosed about 4 years ago with a Mast Cell Disorder.  My symptoms seem to be escalating, last episode landed me in the ED due to passing out.  Almost gave my poor Mom; who lives with me,  heart failure. I have an appointment with Dr Akin at B&W later this month.  I have been reading a lot of the posts and many of my questions have been answered so...thank you to all who write.  This has been a scary and confusing road these last 4 years, I feel fortunate to have minor symptoms compared to others and my thoughts and prayers go out to all.  I was a little nervous about my appt with Dr Akin later this month but from this blog it's pretty clear that I will be in good hands.  These last 4 years I have been followed by a hematologist who has come right out and stated that he is really not interested in my case because my BMB was negative for full mastocytosis.  his response to my issue of deep bone pain was "if he exercised as much as I do he would have pain too" needless to say I was feeling a little like I was wasting his time.  My treatment so far has consisted of Zyrtec and Zantac, we just added an ODT Zophran for those vomiting episodes (wish there was something for the other side of the digestive problem) my hives have been manageable with Benadryl have not had to use my Epi Pen.  I have carried epinephrine since I was 16 due to a bee sting allergy. I am blessed to have great family and friends who support me, unfortunately it;s hard for them to understand my conditio and the sporadic nature of it therefore  I am very glad to be a part of this community.  Thanks for letting me share.
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Riverwn
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Re: Hi, my name is Patty
Reply #1 - 07/03/14 at 10:55:56
 
Hi Patty and welcome to the board!!
You are newest among the many Masto Muskateers Smiley Im thrilled you have Dr Akin. You made an excellent choice, THE best.

We've been talking recently that the newest research says most forms of Mast Cell Disease "might" be different stops on the same journey. This isnt a definite yet, just a theory being worked on. Your feeling of escalating symptoms makes sense to many of us here.

I can understand your dismay at that Hematologist attitude and I'm so sorry he was such a jerk to you. His remark about your deep bone pain shows his complete lack of understanding of our disease. And while your old friends might not totally understand your illness, your new friends do!
Glad to have you here,
Ramona

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mountain girl
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Re: Hi, my name is Patty
Reply #2 - 07/03/14 at 12:48:53
 
Hi Patty,

Welcome to the group.  Thanks for sharing your story and experiences. Others will learn from you!  Let us know how the visit with Dr. Akin goes. I have heard nothing but great things about him.  

I am sorry that your symptoms seem to be escalating and that your doctor is being so rude.  It is too bad he can't figure out another way to tell you "I have no idea how to help you". Because that is really what he means.  Dump him.  Do you have an immunologist that can team up with Dr. Akin?  Have you considered taking Cromolyn?  I have read about many people that had very bad bone pain right up until they started cromolyn.  Also if you get your mast cells under control it might cut back on the digestive problems...well all of the symptoms really!  Good luck to you.
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