Hi there, and welcome too healing well.
The last thing I want to do is give you false hope that this isn't the case for your daughter, as it would be much more of shock for you if the tests came back positive. I am going to try to be honest as possible, and hope it doesn't get you more worried. I must remind you I am not a professional, and only know what I know through my experiance of having CF myself, and knowing other patients with CF or asthma.
In my experiance, the only person with CF that I know with leg problems is me. My leg problems aren't CF related, although still undiagnosed as a muscle condition. I have heard of people having achey legs though, because of lack of activity due to breathlessness or tiredness.
With regards too the winter thing- CF patients vary, some people find summer harder, some find winter harder. I personally find although it's harder to breath in cold air, less bugs grow. I need a lot more treatment in Summer, as that's when chest infections occur most for me.
Some people who aren't as sensetive to the same bugs as me, find the winter weather a lot tougher too deal with.
A lot of people find fast alterations in weather the worst, as your body doesn't get a chance to adjust before the weather changes again.
Having CF, one thing I find is that if I'm warm my lips start to taste salty, if I haven't eaten in a while. My palms for me are my hottest place, and sweat most. My palm and fingers always taste really salty, especially my thumbs. My brother who also has CF though, doesn't lose as much salt as me, and never notices his salty skin like I do.
The sweat test is a good indicator of CF. A blood test to test for the gene is also a good step to take.
The lung capacity test in my opinion is not the best indicator. Here's the reason why-Up until age 18, my lung function was at 113%, 13% above what is average for my age, sex and height. Even now it's at 87%, which is still incredibly good and only 3% below my physiotherapists. I get really affected by bugs, and have needed IV antibiotics at least every 2 months for the last year. Some people have lung function of 40%, but don't need IV's so regular.
My friends girlfriend has severe asthma, and has really low lung function, and always has, and is in hospital with chest infections more often than me.
I hope some of this helps. It is unfortunately a waiting game, until results come back to tell you for sure. CF has so many different things it effects, and every person with the condition is different, that noone can ever tell for sure until tests are done. I'm glad you have a good lung doctor though, that you feel you can trust, that is the best way to start. I hope the wait isn't too long.
Co-moderator in the: Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Post Edited (Darkies Gem) : 10/28/2007 3:37:47 PM (GMT-6)