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  Mast Cell Disorders Forum › Welcome! › Introduce Yourself/Share Your Story › still searching for my core illness
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still searching for my core illness (Read 9353 times)
Starflower
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Re: still searching for my core illness
Reply #15 - 08/05/11 at 12:47:04  
Those tests are NOT difficult to get done... and are an important start to look for SM as well as to check for several competing diagnoses: IgE allergies, HAE, and autoimmune disorders (urticarial vasculitis, lupus, etc...).  "Freckles" that urticate when you stroke them sound like UP, not just dermatographism.  UP is diagnosed with a skin biopsy.  The trick is to find a dermatologist who knows about UP and a pathologist who knows how to stain properly for mast cells.

Sorry that you had such a bad visit... unless this doctor is willing to perform at least some of the tests, he is not worth your time and energy Sad

Heather
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We're all in this thing together
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Kate:
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Re: still searching for my core illness
Reply #16 - 08/05/11 at 13:08:09  
Heather,

Thanks for the reply.  I didn't make that very clear.  Those are the tests he DID order.  He didn't order some of the tests that Afrin/Akin recommended.

So maybe he is off to a good start?  I have no idea.  I was stressed out because before Dr. B came to see me he made some doc in training do a history and diagnose me for 45 minutes!  He was clueless.

Kate
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Starflower
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Re: still searching for my core illness
Reply #17 - 08/05/11 at 13:34:45  
Ah... well that is a different story.  If he ordered all the tests you listed that's actually an excellent start!  

Heather
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
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jenwic
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Re: still searching for my core illness
Reply #18 - 08/05/11 at 13:49:31  
That sounds a lot like my visit with Dr. Bernstein, Kate.  You got more tests ordered than he did for me.  I also had to see the assistant first.  He also did the scratch test with the wooden stick on my arm.  That was AFTER I asked for a mast cell stain biopsy.  He said that since I didn't welt up after the "scratch test" that I don't have cutaneous mastocytosis and don't need a biopsy.  These doctors are SO frustrating.  

At least you will get some test results out of the visit.  You can share these with Afrin or Akin if you get to see one of them.  

My test results all came back normal, so now I'm thinking of seeing Afrin or Akin too.
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