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AIBSE/AZOOR, Big Blind Spot

I am looking to connect with other people who have AIBSE/AZOOR. I know some think these are different and some think they are the same. The think i know is that I don't like hearing you have this and it is rare and there is nothing we can do for you and see you in 6 months for another check up. Please if anyone else has this please respond. Or if you know where i can connect up with others who have the same thing.
Laurie in WA
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Avatar universal
I have have AIBSE as well and I would love to correspond with others who have had this diagnosis- I am coping with it and living a normal life but it can be very frustrating and I would welcome the chance to talk to others - my email is ***@****
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I know this is a year old, but I have AZOOR.
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Avatar universal
I have AIBSE. Was diagnosed with it 7 years ago. How is it going for you?
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My wife has been diagnosed with Azoor today. We live in northwest Washington State. She has been up to Seattle many times to visit different Doctors. No Doctor could figure out what was going on. After 3 years, I sent her to Boston to visit a doctor there. I am sorry I can not remember the Doctors name. But the Doctor Diagnosed with AZOOR. The doctor wants to send her to New York for a second opinion because it started as one disease and moved into AZOOR. The Dr. stated this has only happened one other time. The Dr. want her to follow up with a doctor where we live and start Chemotherapy. She would have to travel 4 hours one way every 6 weeks for treatment. My wife and I are in our late 30s and are trying to have a baby.

Sorry, As you can tell from the way I am writing this. My mind is not clear.
I am mad at myself for not saving the money and going with my wife. We both work and it still is hard to saving money.
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233488 tn?1310693103
MEDICAL PROFESSIONAL
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Avatar universal
welcome to the yahoo group
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233488 tn?1310693103
MEDICAL PROFESSIONAL
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Avatar universal
Hi -
I think I have a potential diagnosis of this as well. Would love to connect if you are still on here.

Nicole
Green Bay, WI
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Avatar universal
bumping , still looking
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233488 tn?1310693103
MEDICAL PROFESSIONAL
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