Hi, I'm new to the group, my name is Hope.
I have been diagnosed with diffuse connective tissue disease.
My throat has been swelling up for over a year. I have had episodes of coughing and now munch on Halls Menthol Lyptus almost constantly to anesthetize my throat and keep it from closing up. When it does, I have coughing fits and try to catch my breath for a minute or two, while stuffing my mouth with Halls' and getting exasperated. My ENT ordered a CAT and it shows severe narrowing of the airways at the 4th and 5th vertebrae with some degeneration of these as well. When the ENT views the inside of the throat there is a lot of inflammation in the front and back of the voice box, sometimes w inflammation of the vocal chords as well. A month ago, lesions in my nose began to eat away at it again. The septum is already gone. She is concerned about Wegners as at this point the scabby lesions are at the bridge of the nose. She has written a letter documenting her concerns to my rheumatologist. The throat problem however, she believes is most likely due to the spine. I do not agree but am trying to get an appointment with a spine surgeon to evaluate this. I am ANA and ANCA negative but on a very high dose of Imuran. It has taken decades to get some relief but I feel like while I try to meet the various specialists sstandards my time might be running out. Would appreciate any info and/or advise.
thanks
Hope
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