New to wegners

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I have been so ill since september 16 and after seeing neurologist x2, eye surgeon, ent surgeon, dermatologist, rheumatologist and several medical practitioners and bone scans, MRIs I'm still hoping on an answer Monday when I see rheumatologist again. All bloods clear so far but I'm in pain in joints, facial pain in eye, nose cheeks and jaw,swelling in face and redness. Fatigue and pain and generally feeling crap. I'm so over it. Rheumatologist suspects wegners. If bloods clear where do I go from here. Please help

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  • Posted

    You need to get a biopsy to be sure. Mine was inconclusive with blood tests but a biopsy of my eyes clearly proved that I have Wegeners. I was miserable for almost three years now get two infusions a year of Rituxin and I have no pain anywhere and feel great!!! Get a good doctor!!

    My lead physician is in Boston I live in Atlanta Ga..

    He specializes in ocular inflammatory disease and has saved my eye sight! Lungs affected too and sinus but I am doing great. Good Luck..I have been in Prescott, methotrexate, placquinil, cytoxan, all of it but now just Rituxin life changing for me and pleased as punch!! Best to you fellow Weggies friend..

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  • Posted

    I'm sorry Karen. I don't get on the internet every day. Just don't feel like it. When I was diagnosed in June, 2009, I started out on 80mg of Predisone and Cytoxin. My face swelled up like a frog. I gradully came off of it but I was on it for about 6 months and stayed on 5 mg for about another 6 months. Have you been dignosed yet? Your symptons sound like mine before I was diagnosed. I was very sick when I was diagnosed. I was under the care of my Primary doctor, a Rheumotologist and a ENT. I was diagnosed by an Allergy and Asthma doctor. I love him, I feel like he saved my life. I hope you feel better and have faith that things will get better.

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    • Posted

      Thanks Sarah. My bloods and ent consult didn't show wegners. The rheumatologist believes I have facial erthymelalgia which is rare as it's normally in extremities not face. He said he has never seen a facial case in all his 30 odd years in practice. I still have all the same symptoms of wegners and new symptoms of swelling in back knees. It still appears to be a guessing game at this stage. They are starting me on medication to see if I respond and checking my endocrine system now.

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    • Posted

      How does facial erthymelalgia affect you. Mine right side of my face is deformed. It's just like someone or something has shoved my face to the right about a half inch. It has become worse in the last few years. I've lost hearing in my right ear, my right eye has 20/400 vision, my upper sinus openings are very small causing me to have upper sinus infections and I have a knot behind my right ear. Even one side of my mouth is narrow on the right side. I was a large baby at birth, weighing over 9 pounds and was delivered at home in April, 1948. I don't know if this is what happened or if it is caused by Wegener's. I've had Wegener's for 8 years now and it's bad. I hope you get some results.

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    • Posted

      Hey! That's good you don't have wegener's, but this sounds bad too. I hope you get better and feel better.

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