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MCD - Mast Cell Disorders
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cheminista
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04/07/12 at 03:53:49
 
Thank you for accepting me to your forum. I have been plagued with hives and swelling of my eyes, lips, and ankles since September. I have been to an allergist (no allergies) and a dermatologist who performed a biopsy on one of my hives(negative for mast cells). I have been insulin-dependent for 28 years and I also have Hashimotos' thyroiditis. This past summer, I had a piece of cartilage taken from my ear and it was placed into my nose due to inflammatory cells breaking down my nasal tissue. My endocrinologist suggested that I see a hematologist who performed a bone marrow biopsy 10 days ago. I go back for a follow up on 4/9. Does anyone have any similar signs or symptoms?
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Joan
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Reply #1 - 04/07/12 at 05:48:09
 
Hi and Welcome to the Forum!

Some people with mast cell disorders have hives and Hashimoto's thyroiditis (I have the latter.)

There are some blood and urine tests that are usually done in a work-up for MCAD.  The testing is listed on this forum, as well as information on being worked up.  Read all you can about MC diseases so you can be well-informed when you meet with the hematologist.  The BMB will show if you have systemic mastocytosis or other hematological issues, but even if it's negative, you still can have mast cell activation problems.

Do you know what triggers your hives and swelling?  Foods, for example, may not be true allergens for you, but they can still be "triggers" and cause symptoms.

If you want to post your current meds, people will comment.  Most allergists put MC patients on too little doses of antihistamines to be effective.

Let us know how you're appointment goes, if you want to share that.  Everyone on here cares!
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Lisa
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Reply #2 - 04/10/12 at 06:35:03
 
Hi Chemi and welcome!!


As to some of your symptoms, yes they do sound like masto.   As to it eating up the nasal tissues, you could only find that out if the tissues were run through the immunohistochemical testing for masto.   I would suggest you ask your doctor to do this for it may indeed tell the story.  

I think itīs great your doctors have raised suspisions for masto - it means they are very seriously trying to find answers as to whatīs wrong with you.   I hope they can find them soon!!

Let us know what your triggers are and what meds you are taking and perhaps we can help you more.


hugs!

Lisa
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Donīt forget, there is so much more to life than being sick!
 
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