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MCD - Mast Cell Disorders
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Introduction of New Member (Read 2272 times)
VickieS
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Introduction of New Member
03/12/12 at 05:43:46
 
This is my first post - I am hopeful that this community will be able to help me negotiate the difficulties getting good medical treatment.

First anaphylactic reaction within one year after last period/menopause.

Severe (wheat-epi) and many food allergies (positive prick test for wheat, beef, chicken, soy); unable to eat any mammal, fowl or legume w/o noticeable side effects.

Food sensitivites - dairy, egg, histamine foods
Medicine sensitivities - synthroid, quinolones, ephedrine (dental) other antibiotics, inactive ingredients: lactose, gelatin, glycerin

Typical reaction to offending foods - flushing, emotional disturbances, gi symptoms, headaches, fatigue

Reactions to medicines - emotional disturbances, cardiac consciousness, increased middle ear fluid, fatigue, bloat (including antihistamines)

Mayo - Butterfield - possible MCD - no commited diagnosis - findings normal except elevated tryptase and prostaglandin f2 alpha

Mayo - Camilleri (GI) - Dumping syndrome - no history of GI surgery

Mayo - endoscopy/colonoscopy - tumor identified as lipoma in ascending colon not biopsied - new cysts in liver and kidney (no appearance in prior radiology)

No one has done proper NET/carcinoid workup

Veterinary research is bountiful regarding GI mast cell tumor - requires that special excision guidelines be followed for maximum benefit (no re-ocurrence) - Two docs I have seen (allergy and hematology) now willing to say in writing - get tissue samples of lipoma and cysts.

I hope that today is a GOOD day for all of the members!
Warm regards,
Vickie
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Lisa
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Volta Redonda, RJ Brazil
Re: Introduction of New Member
Reply #1 - 03/13/12 at 13:14:54
 
Hi Vickie and Welcome!   I hope we can indeed help you.

Having an elevated tryptase and prostaglandin D2 already cinch your diagnosis as MCAS.   However, you´ve got a TON going on with you and since the Mayo is not good at dealing with MCAS, I would suggest you considering going to Boston and the doctors there.  Have had that evidence and that kind of workup, I don´t believe you´ll have any difficulties getting accepted there.  You need, however, a local doctor who will refer you to them.  

Since you´ve already been to an excellent institution, there´s been a lot of searching done on you and I think that if you set up an appointment and then write to Dr. Castells explaining what is still unresolved, she can work it out so that you can see some of the other doctors up there and get some of these other issues attended to.  

I hope this helps!


Lisa

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Don´t forget, there is so much more to life than being sick!
 
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PamH
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Indianapolis, IN USA
Re: Introduction of New Member
Reply #2 - 03/14/12 at 07:43:04
 
Welcome!
Wow you have to avoid a lot of food! I was feeling sorry for me, until I read your list!
Hope you find a lot of answers here!
Pam  Smiley
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Pam
 
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