can't get DR. to test me

Hope2010

New member
I was sick all the time as a kid with ear infections, tonsilitis, strep, bronchitis, colds, sinus infections,Exzema. As an adult about 2 years ago I was DX'ed with Asthma ( FEV's no higher then 83%)allergies. I have always had stomach issues. My family Dr. first said I was lactose intolerant, but after 12 years of that and my stomach getting worse she had me get a test done for Celiac and it was Neg. She then said " oh it is prob just IBS" .Stools are always messed up .I have told my DR. that I have fatty stools a lot and that they are either loose or hard to go. I was always skinny as a kid . I also have GERD.I have sinusitis. I have unexplained hearing loss and My ENT said he just has no idea why . I have mentioned to my family Dr,my ENT and My immunologist/allergist/Pulmonologist that my Grandmother had cousins who had CF and died from it and asked them about getting tested . They all said the same thing that "no no way it's that". I go back in a month and I am going to try once again. If I am told no again can I just go some place and have the Genetic Sequencing test done without a Dr. having me do it? Also would they do it even though I do not have insurance? It could just be a coincidence but it is to much of one.

PLEASE HELP THANK YOU
 

Printer

Active member
Tell your Doctor to refer you to an APPROVED CF CENTER to see an CF SPECIALIST. If he/she refuses, tell him/her that you will find a Primary Physician who will refer you. Your health is more important than this Doctors ego.

Bill
 

Beccamom

New member
What exactly do your need your doctor to do. If you need a referral for a pulmonologist maybe you can ask since you have repeated infections and not mention the CF possibility. Recently I took my daughter to a geneticist for a non-CF issue and realized the PhD geneticist that I spoke to before the MD genetic doctor came in the room did not understand how I could have CF and be pleasantly plump. The MD must have explained that not all people with CF are pancreatic insufficient to the PhD lady since he brought this up in our discussion of the non-CF issue. So if a PhD geneticist who is working in a non-CF related clinic could second guess my diagnosis which we weren't even there to discuss I can see how a primary care doctor could be completely clueless. Best wishes. QUOTE=Hope2010;923368]I was sick all the time as a kid with ear infections, tonsilitis, strep, bronchitis, colds, sinus infections,Exzema. As an adult about 2 years ago I was DX'ed with Asthma ( FEV's no higher then 83%)allergies. I have always had stomach issues. My family Dr. first said I was lactose intolerant, but after 12 years of that and my stomach getting worse she had me get a test done for Celiac and it was Neg. She then said " oh it is prob just IBS" .Stools are always messed up .I have told my DR. that I have fatty stools a lot and that they are either loose or hard to go. I was always skinny as a kid . I also have GERD.I have sinusitis. I have unexplained hearing loss and My ENT said he just has no idea why . I have mentioned to my family Dr,my ENT and My immunologist/allergist/Pulmonologist that my Grandmother had cousins who had CF and died from it and asked them about getting tested . They all said the same thing that "no no way it's that". I go back in a month and I am going to try once again. If I am told no again can I just go some place and have the Genetic Sequencing test done without a Dr. having me do it? Also would they do it even though I do not have insurance? It could just be a coincidence but it is to much of one.

PLEASE HELP THANK YOU[/QUOTE]
 

AmalynRose

New member
If your doctor is not willing to give you a referral to a CF clinic, it's time to change doctors or just call the CF center nearest you directly.
 

athletixbc

New member
When I was younger I went to the family doctor that my parents chose. He said for years that I had chronic bronchitis, probably due to allergies. I was tested for allergies and was found to have four allergies, and proceeded to take allergy shots for three years. I no longer had any allergies, but I was still getting annual bronchitis. When I turned 19 and was legally allowed to choose my own doctor, I changed doctors. The very first visit with the new doctor he noticed clubbing in my fingers and referred me for a sweat test. I was diagnosed officially a few months later. Luckily for me, my bouts of bronchitis responded well to oral antibiotics and always cleared up, so this delay didn't seem to cause me any lasting harm. I hope you change doctors to one that will listen to you and not one that ignores your input.

P.S. I don't know where you live, but if you don't have insurance, get some BEFORE you get diagnosed if you can. If you wait until after diagnosis most insurance companies will not pick you up, and the ones that do will charge exhorbitant premiums.
 
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