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New Message on Pituitary Chat

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From: moms2jax
Message 10 in Discussion

Dear Sherry,

I have literally joined this message board so that I can respond to you.  I am, 
like all, so very dearly sorry.  I too know how crushing this disease can be on 
the spirit, let alone how bad it is on the body.

I have a two and a half year old daughter.  I was diagnosed with acromegaly 
just about two + months ago. You are not crazy and you are not alone.   I want 
to tell you something about scans.  My first MRI showed a potential tumor - 
small - 2-3mm anterior.  The small size did not seem congruent with the 
disease.  I had fancy MRI's, Octreotride scans, CT scans and Pet-scans (I have 
good insurance).  They all came back normal - no tumor.
We thought we had to go with the small tumor as the source, I actually felt 
lucky, thinking it was caught so early.  During surgery,that little "shadow" 
was benign and I did have a different tumor in my cavernous sinus.  So I still 
have the disease. Exploring specialists to reread scans and pathology (dominant 
for prolactin).

all this background makes me happy you have been on medicines and worried that 
you are no longer.  Question: why can you not go back to the original pharmacy 
or have them make it without the mannitol? (I do not know what that is...) if 
you are in LA area, I can recommend a pharmacy that can probably assist you if 
the mannitol is not crucial for anti-tumor care.

I think you might be in california if they recommended Cedars.  Push for it.  
(I am in LA.  You need one of the top hospitals) Ask your doctor to fight FOR 
YOU. He/she wont stop being your doctor and they can maybe take some of the 
insurance struggle off you.

If you want to email, to vent, to cry, to get a little woman/mommy empowerment 
boost, please contact me.  It is an awful disease and really hard when you are 
a parent.

hang in their best you can.







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