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is this really MCAD? (Read 2155 times)
Godsgal
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is this really MCAD?
04/11/11 at 08:36:08
 
Hi all,
I have POTS/dysautonomia, with normal tryptase, methyllhistamines of 280 in my urine (over 200 is abnormal) and that was on a histamine restricted diet and forgetting to pee once in the jug.  
SO.....my flushing, crazy tachycardia episodes in 150's, hives, rashes, and eczema has all stopped since I have been on the histamine free diet.  I cheated on it recently to take my prostaglandin test and I started getting these episodes where I was all of a sudden hot all over and feeling faint, like I'm going to drop dead.  Absolutely terrible.  Hands and legs shake too.  Does that sound like an MCAD issue or is that my POTS?

In just a wee bit of denial over the MCAD thing, but it makes since since I have had chronic hives since I was a child.
I take a beta blocker everyday.  Does that cause mast cells to degranulate?  
THANK YOU ALL.
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Riverwn
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Re: is this really MCAD?
Reply #1 - 04/11/11 at 08:41:18
 
YES it is, with that number on your methylhistamine.. Tryptase is often normal for some masto people.  The symptoms you listed do happen to many of us.
Please talk to your doctor about getting OFF any beta blocker. it does make you degranuate easier and makes it harder to treat yopu in an emergency with epi.  Do NOT stop the beta blocker cold--you must taper off it it very slowly.. Most of us take calcium channel blocker for high BP (like cardizem, ditiazem). Talk to your doctor about this.
Good luck Hon
Ramona
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Josie
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Re: is this really MCAD?
Reply #2 - 04/11/11 at 09:04:22
 
Hi sweetie Wink

I understand the desire for it not to be mast cell activation . I have posted my experience in my first 4 months of serious reactions . I hope it shows how  i so wanted it to go away .

I am in a different place now , with good medication , MCAD , is controlable . Not curable , but controlable Wink

The beta blocker information is available on the mastcytosis society web page as they discuss all forms of mast cell problems .

A good meds balance will control the effects of histamines - very fast heart rate . You are not alone in not having the breathing part of anaphylaxis and skipping to the low blood pressure phase . Only a few doctors understand this , thats why none have sussed this for you before Wink The mast cell speclaists do Wink Thats why you need one and not any old doctor

I am sorry if I was strong in my first message , sometimes there are things I need to say , that need to be clear Wink

Josie xxxxxxxxxxxxxxxxxxxx

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