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Help, what should I do? (Read 1328 times)
Julie
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Help, what should I do?
07/01/11 at 08:51:06
 
Hi,  I'm calling on anyone to help me.
I have not been diagnosed yet with mast cell disorder but started having the tests for it with a local allergist last year. The tests came back negative. I did want to follow up with a mast cell specialist but distance has been a problem. I live on west coast of Florida. I have been helped with some of the meds.  But lately I have felt I hit a plateau.
Right now, I'm having some scary episodes that I don't know what to do about.  I started having palpations several times a day. I also have dizziness, headache and diarrhea. I've almost collapsed at the wheel driving. Today I was out in the heat in the garage  I got sick and had trouble breathing.  I came in and the AC revived me but has left me scared. This week I had seen a cardiologist and said there was nothing wrong with my heart.
I probably have left some things out but wanted to write right away. I don't know what to do. Any input is appreciated.
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Riverwn
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Re: Help, what should I do?
Reply #1 - 07/01/11 at 10:16:48
 
Hi Julie,
As scary as they are, those are all symptoms/reactions for a mast cell patient. Does that mean you have it? Only further testing will tell--to exclude other diseases and to try to pin down whats going on with your illness. No one test can do that--so you arent finished yet investigating.

In the meantime, stay out of the heat, seriously, its one of the worst triggers for most of us--and you live near me, its over 100 every day now. Stay in cool AC. Eat light, no spicy foods. No big exertion, take it easy, light activity.

Its time for you to read and learn.. low histamine diet, symptoms of mast cells that misbehave, you need to find a mast cell DR expert near you. Youre lucky I live near you lol..Ive been searching for one and there is only two I know of in Fla. One is at Mayo clinic in Jax, referred by Dr Castells. They dont accept my funding so I had to look further. I finally found one I have more faith in--but time will tell. In Orlando at MD Anderson Hospital is Dr Hejdenberg. He seems to be a really nice DR. You might want to call him and make an appt. He is available to new patients starting near the end of July. I'll be seeing him at aprox that same time period. Hope this helps you!
hugs
Ramona
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Julie
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Re: Help, what should I do?
Reply #2 - 07/01/11 at 12:53:06
 
Thanks, Riverwmn. I'm so glad to know you are close by.
I'm taking heed to your advice and am staying inside. I have
recovered from my episode outside.  Smiley
That's good news about the doctors! I am encouraged. What is the name of the doctor at Mayo?
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