JUST DIAGNOSED HAVE NOT A CLUE WHAT TO EXPECT

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WITH THIS WEGNERS THING NOW PANCREITIS LEANING TO THE LEFT AS IF READY TO FALL BUT NOT FALLING JUST TIPPING OVER

ALREADY BLOOD IN THE LUNGS URIN AND POOP

SHAKES FATIGUE 

TIRED EVEN WHEN SPEAKING

JOINT PAIN A BIT OF SWELLING 

THROWING UP 

POOP INCONSISTANT 

WAS TOLD 3 YEARS LESS THEY CAN GET ME INTO REMISSION

REALLY AT A LOSS IN WHAT ELSE TO EXPECT 

AND THE ROAD TO RECOVERY?

THANK YOU EVER SO KINDLY FOR READING 

 

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4 Replies

  • Posted

    Are you currently seeing an autoimmune doctor?  It sounds like you need to get a referral for a specialist.  Very important to be on the proper meds/sure you probably get regular bloodwork,  So you have had this 3 year's and not been in remission at all?  Find out who the best doctor's are in your area, Re:  autoimmune disorders.  When you were admitted to the hospital ( I will assume you were when you got Wegener's) what were you admitted for?  I was finally admitted for pneumonia right lung from Wegener's.
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  • Posted

    Sorry I see you were just diagnosed.  With the proper meds they should be able to get you into remission much sooner than 3 years, get 2nd and 3rd opinions
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  • Posted

    I was very sick, and weak when I first came home from the hospital.  I had to sit after only standing for 10 min.  It takes time.  Over time you will get better and get stonger.  I did walk regular and push myself when I could, but yes medication etc can make it difficult if you need to be close to a washroom.  Take care
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