Inability to talk from Wegener's. Anyone had this?

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During a year of a variety of symptoms from Wegener's I had a short episode of talking nonsense. I was sent to hospital for head MRI and checks to make sure a stroke wasn't involved, & everything was clear. Anyone had/heard of such a thing associated with Wegener's? 

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  • Posted

    Hello! Actually I had two incidents like this, one very brief and one rather serious. The brief one involved my inability to put a sentence together at the deli counter. The words were in my head but wouldn't come out of my mouth properly. Frightening of course but also embarrassing! Then about a year ago my sinuses swelled to the point that they were putting pressure on my brain. I was speaking nonesense, falling etc. After an ER visit and a trip to my primary I was given Pred and Bactrim and felt as if I had been raised from the dead. As a postscript that loss of words still happens from time to time. Not sure why. Just another cross we Weggies have to bear. Best to you.

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    • Posted

      Your deli counter experience was similar to mine. I was asked by an X-ray tech why I was sent there, & tried to explain my issues but spoke just jumbled words. Tried again & still unable to communicate, althyough I was thinking clearly what I wanted to say. Haven't had anything like it since, & after about 4 mo with pred & methotrexate my Wegerner's is in remission. I am continuing with lower pred but still methotrexate. Interestingly my rheumatologist doesn't think my speech issue was due to Wergener's. I am still experiencing fatigue which I describe as feeling like I have just woken up, but the feeling lasts all day. Since my blood work is clear of Wegener's, they are looking at testosterone levels for clues. I expected that Wegener's in remission would remove all symptoms    

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  • Posted

    Yes I have. One of my highschool classmates daughter was diagnosed with Wegener's a couple of years ago. She is in her 30's. The details of her treatment plan is sketchy as she was not very open to discussion but from her grandmother she may have skipped some of her rituxan infusions so she could get pregnant again. About 6 months ago she begin having issues with remembering things, such as how to change her babies diaper. From what I read on Wegeners, it can affect any organ in the body.

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  • Posted

    I have had problems remembering words and names. My primary doctor put me on Aricept & I have improved. I had a great memory and it's very aggrevation to not be able to remember anything. Hope you get better.

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