mams57
04-13-2016, 06:33 AM
Hi all
I will try to touch on everything for an introduction but my experience has thus far been 12 years and I'm just receiving hope as to a diagnosis.
I began having trouble in about 2004-2005, severe pain going up steps and debilitating sinus issues. Constant sinus pain in my forehead, inflammation, right ear seemed constantly a mid ear fluid filled mess. PCP kept treating my chronic sinusitis but nothing helped after prednisone taper was finished. I was diagnosed with COPD ( I smoked ) for my shortness of breath and was told smoking was my problem. It was making me tired, run down and was keeping my sinus issue flared up. It appeared to be all my fault and I felt horrible for even bringing attention to my problems. After all, my fault.
As pain and stiffness became worse, sinus pain was waking me up 2-3 times per nite at times. I laid elevated, tried steroid nasal meds., nothing but steroids would help. I gained a pulmonary doc and began a regimen of Advair, Albuterol, nebulizer etc.. In 2006 I dropped a motorcycle by planting my foot too quick on a hill, a 500lb bike pinned me to the concrete shattering my tibia plateau/knee and top of tibia. Hardware and bone graft failed and ended up 1 yr later with total knee and post replaced with all metal. The real disease set in then. I ended up in telemetry ward for 7 days while Drs shook their heads. We were on vacay 1000 miles from home and I was so weak, sick and couldn't breathe and lost 14lbs the first 4 days. I thought I was dying, they feared I was, my sinuses and muscles/joints were horrible. They couldn't detect any reason for my plight, labs and things showed up fairly normal but decided to pump me full of steroids. Within hours I started improving and a couple days later gave me a long acting steroid injection ( 3-4 month acting ) and reluctantly let me go. Since 2010 I haven't touched a cigarette. I've still suffered all of the symptoms, pain, fatigue, fear, sinus, hoarseness, and now added osteoarthritis of the spine and joints. R F procedures on L4, L5, S1 and medial branch blocks to the nerves keep me going. Antibiotics and 3 -4 prednisone tapers a year have kept me from a death bed but until I finally got into a Rheumatologist I've had no real answers. She listened, looked, poked, prodded and read my extensive health file and said she believed it was Wegeners. I've taken 4 doses ( 1 month ) and have had minimal sinus pain and the fatigue is even better. It's been so long that I don't remember feeling even this great for years and trust me it isn't spectacular...😊 But I am alive, some better and grateful to think I may have the answer to a horrible nightmare. Thanks for reading my ramblings, feels good to know there are others who may understand that which I was unable to make sense of.....😊
I will try to touch on everything for an introduction but my experience has thus far been 12 years and I'm just receiving hope as to a diagnosis.
I began having trouble in about 2004-2005, severe pain going up steps and debilitating sinus issues. Constant sinus pain in my forehead, inflammation, right ear seemed constantly a mid ear fluid filled mess. PCP kept treating my chronic sinusitis but nothing helped after prednisone taper was finished. I was diagnosed with COPD ( I smoked ) for my shortness of breath and was told smoking was my problem. It was making me tired, run down and was keeping my sinus issue flared up. It appeared to be all my fault and I felt horrible for even bringing attention to my problems. After all, my fault.
As pain and stiffness became worse, sinus pain was waking me up 2-3 times per nite at times. I laid elevated, tried steroid nasal meds., nothing but steroids would help. I gained a pulmonary doc and began a regimen of Advair, Albuterol, nebulizer etc.. In 2006 I dropped a motorcycle by planting my foot too quick on a hill, a 500lb bike pinned me to the concrete shattering my tibia plateau/knee and top of tibia. Hardware and bone graft failed and ended up 1 yr later with total knee and post replaced with all metal. The real disease set in then. I ended up in telemetry ward for 7 days while Drs shook their heads. We were on vacay 1000 miles from home and I was so weak, sick and couldn't breathe and lost 14lbs the first 4 days. I thought I was dying, they feared I was, my sinuses and muscles/joints were horrible. They couldn't detect any reason for my plight, labs and things showed up fairly normal but decided to pump me full of steroids. Within hours I started improving and a couple days later gave me a long acting steroid injection ( 3-4 month acting ) and reluctantly let me go. Since 2010 I haven't touched a cigarette. I've still suffered all of the symptoms, pain, fatigue, fear, sinus, hoarseness, and now added osteoarthritis of the spine and joints. R F procedures on L4, L5, S1 and medial branch blocks to the nerves keep me going. Antibiotics and 3 -4 prednisone tapers a year have kept me from a death bed but until I finally got into a Rheumatologist I've had no real answers. She listened, looked, poked, prodded and read my extensive health file and said she believed it was Wegeners. I've taken 4 doses ( 1 month ) and have had minimal sinus pain and the fatigue is even better. It's been so long that I don't remember feeling even this great for years and trust me it isn't spectacular...😊 But I am alive, some better and grateful to think I may have the answer to a horrible nightmare. Thanks for reading my ramblings, feels good to know there are others who may understand that which I was unable to make sense of.....😊