Hi,
My son Josh as CF and his clinic doctor thinks that I do also. We both have very similar results on nasal potential differential testing, always have sinus headaches (well he doesn't so much now with treatment), and have a history of asthma/lung problems.
I saw a doctor at the adult CF clinic at Hopkins who said he thought I had CF and ordered more test; my son's doctor sent me over and this doctor reviewed all my history before agreeing to see me. My main lung functions were okay but the lower airways were at 22%. I didn't know I shouldn't have taken bronchodilators before the test. The first time I had functioning testing, about 20 years ago or more, I was at 60%. Sinus and chest MRI showed no lung scarring but chronic sinusitis (thickening) though I had sinus surgery 1 and 1/2 years ago. I live on predisonne (about every 2 months need a burst/ use to be on it everyday years ago) and antibiotics for my sinuses. Sweat chloride was negative but my nasal potential looked exactly like Josh's.
When I retured to pulmonary clinic I saw a different resident and primary doc. She told me I didn't have CF or asthma, and wanted to stop my meds. I felt like a hyperchrondiac (?. She ordered a few more blood test and a asthma challenge test (Methocholine challenge test). I did not react to the "metho" which the technician said meant I did not have asthma. However both technicians siad my funtions were a little low, the average was 78% and at time the machine read "no plateau on expiratory" (I think that's right). They even asked about my sweat chloride and finshed up with "we need to figute out what is going on with your lungs".
I didn't like the second doctor I saw at Hopkins so today I got off his rotation and back on the one with Dr. Merlo; it means I have to wait a month and a half longer to get in. I looked him up on line and he is more into CF outcomes. He is also the doctor my son's doctor tol me to see.
Any suggestions on what i could have or not have? What to do? I'm loaded up on meds including theophylline, and almost a year ago had to start using xopenex by machine. I take Advair 500 and flovent. I'm beginning to think I am crazy!!!!!!!
Genetic testing found no known mutation!!!!!
My son Josh as CF and his clinic doctor thinks that I do also. We both have very similar results on nasal potential differential testing, always have sinus headaches (well he doesn't so much now with treatment), and have a history of asthma/lung problems.
I saw a doctor at the adult CF clinic at Hopkins who said he thought I had CF and ordered more test; my son's doctor sent me over and this doctor reviewed all my history before agreeing to see me. My main lung functions were okay but the lower airways were at 22%. I didn't know I shouldn't have taken bronchodilators before the test. The first time I had functioning testing, about 20 years ago or more, I was at 60%. Sinus and chest MRI showed no lung scarring but chronic sinusitis (thickening) though I had sinus surgery 1 and 1/2 years ago. I live on predisonne (about every 2 months need a burst/ use to be on it everyday years ago) and antibiotics for my sinuses. Sweat chloride was negative but my nasal potential looked exactly like Josh's.
When I retured to pulmonary clinic I saw a different resident and primary doc. She told me I didn't have CF or asthma, and wanted to stop my meds. I felt like a hyperchrondiac (?. She ordered a few more blood test and a asthma challenge test (Methocholine challenge test). I did not react to the "metho" which the technician said meant I did not have asthma. However both technicians siad my funtions were a little low, the average was 78% and at time the machine read "no plateau on expiratory" (I think that's right). They even asked about my sweat chloride and finshed up with "we need to figute out what is going on with your lungs".
I didn't like the second doctor I saw at Hopkins so today I got off his rotation and back on the one with Dr. Merlo; it means I have to wait a month and a half longer to get in. I looked him up on line and he is more into CF outcomes. He is also the doctor my son's doctor tol me to see.
Any suggestions on what i could have or not have? What to do? I'm loaded up on meds including theophylline, and almost a year ago had to start using xopenex by machine. I take Advair 500 and flovent. I'm beginning to think I am crazy!!!!!!!
Genetic testing found no known mutation!!!!!