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Cystic Fibrosis Message Board


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Hi! I just read your message and just feel for you! I can relate to true frustration although my situation is totally different. Have they tested all your Immunoglobins? (i.e. a basic immune system test? Did they do a sweat chloride test yet? Even though your dna was negative - it sounds like your salt levels, etc. may be effected. I would insist. I'm not sure what they have and havent ruled out - and I'm guessing they have done a CAT scan of your sinuses, and a chest x-ray - if not insist on that too! Do you have any basic allergies that you know of or have been tested for? Just some suggestions - my son, although he is only 21/2 yrs has same symptoms, problems since birth and we've been referred to 6 different specialists - ENT's, allergists, internists, etc. - none seem to know what is wrong or what to do. Recent tests seem to be finding some answers, but not much. Trust your instincts about yourslef as you know you better than anyone else. Don't be afraid to insist about ideas you may have that doctors haven't tried yet - trust me! Doctors are human and aren't always right. Good Luck!
Thanks for your reply.
They haven't done any kind of immune system test or sweat test, I guess I'll ask about them.
They ruled out lung problems with a lung x-ray and pulmonary function test.
They did a CAT scan of my sinuses which only showed a slight swelling. They prescribed a steroid medication which was supposed to reduce the swelling. It didn't do anything at all for the cough, and I guess it didn't reduce the swelling either, because recently when the ENT looked in my sinuses he saw swelling and discharge.
It doesn't seem to be anything infectious, as 3 different antibiotics didn't help, and the ENT said if it were fungal it would have shown up on the CAT scan.
For about 6 months they were insisting it was GERD even though 4 different medicines for GERD didn't get rid of the cough (although they seemed to help somewhat), but now that's been ruled out with an upper endoscopy and barium swallow.
My nose has been running my whole life, which I've always been told was allergies, even though allergy medicines never have the slightest effect on it, so who knows.
I just made an appointment for a sinus MRI which is supposed to show more details than the CAT scan, hopefully it will be helpful.
Good luck with your son. Yes, it's very frustrating when the doctors seem to be taking random guesses. But you're right, the patient or people close to the patient in some ways know more than the doctors.
I'll post again if I find out anything useful.





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