Anne0505
01-07-2017, 01:59 PM
Hello,
I'm technically not diagnosed, but all the testing so far is pointing this way. I started with an ear infection that wouldn't go away. It turned into mastoiditis and surgery to remove part of the mastoid. Mountains of antibiotics later and nothing. The ENT said 30 days post op that he had concerns it was Auto immune. Especially since by that time my joints had started having extreme pain. He referred me to a rheumatologist, but my paperwork got lost in the holiday shuffle. This last week her nurse saw my chart and labs and had been in the office within 24 hours. At the appointment, I was told my labs were elevated out of normal, but only just slightly. My ent had already put me on 40 MG of prednisone a day, so she said that might be keeping my labs in check. She thought my Wegener’s might be limited to my head and nose. Possibly my throat (i have swelling in the lymph nodes and tightening in my throat). She ordered new labs and a chest x-ray. The x-ray showed a 2 cm diameter place in 1 lung and I'm having a ct Monday. The labs were more or less the same, though there was some blood in the UA. Nothing significant.
Currently I'm on 60 MG of prednisone a day and have been given the info on the typical immunosuppressive meds I will likely start after she completes testing. My question is my face. My nose and the bones around it are brutally painful. IT's as if someone has taken a hammer to my face. The prednisone has helped my joints considerably. My face however doesn't seem to be changing. I try ice packs and nsaids, saline sprays to keep the sinus moist. Is there anything I'm missing? I need glasses to see, but it's often very difficult to wear them, is there anyway to help that? Also, is it likely they will biopsy the lung to confirm the diagnosis?
I'm glad to find this group the last 7 months, particularly the last 4, have been so rough. I feel that my doctors have done everything they should escalating treatment until there was no "next step" and then reaching out to the next physician. As a single mom, I feel like I let my children down everyday not being able to play with them as I could just a few months ago.
I'm technically not diagnosed, but all the testing so far is pointing this way. I started with an ear infection that wouldn't go away. It turned into mastoiditis and surgery to remove part of the mastoid. Mountains of antibiotics later and nothing. The ENT said 30 days post op that he had concerns it was Auto immune. Especially since by that time my joints had started having extreme pain. He referred me to a rheumatologist, but my paperwork got lost in the holiday shuffle. This last week her nurse saw my chart and labs and had been in the office within 24 hours. At the appointment, I was told my labs were elevated out of normal, but only just slightly. My ent had already put me on 40 MG of prednisone a day, so she said that might be keeping my labs in check. She thought my Wegener’s might be limited to my head and nose. Possibly my throat (i have swelling in the lymph nodes and tightening in my throat). She ordered new labs and a chest x-ray. The x-ray showed a 2 cm diameter place in 1 lung and I'm having a ct Monday. The labs were more or less the same, though there was some blood in the UA. Nothing significant.
Currently I'm on 60 MG of prednisone a day and have been given the info on the typical immunosuppressive meds I will likely start after she completes testing. My question is my face. My nose and the bones around it are brutally painful. IT's as if someone has taken a hammer to my face. The prednisone has helped my joints considerably. My face however doesn't seem to be changing. I try ice packs and nsaids, saline sprays to keep the sinus moist. Is there anything I'm missing? I need glasses to see, but it's often very difficult to wear them, is there anyway to help that? Also, is it likely they will biopsy the lung to confirm the diagnosis?
I'm glad to find this group the last 7 months, particularly the last 4, have been so rough. I feel that my doctors have done everything they should escalating treatment until there was no "next step" and then reaching out to the next physician. As a single mom, I feel like I let my children down everyday not being able to play with them as I could just a few months ago.