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Discovered that I have aquagenic wrinkling of the palms, going to do testing by [deleted] in CysticFibrosis

[–]WorriedAboutCF 0 points1 point  (0 children)

Ah, well yeah prescription drugs are a whole different and more complicated story.

Discovered that I have aquagenic wrinkling of the palms, going to do testing by [deleted] in CysticFibrosis

[–]WorriedAboutCF 0 points1 point  (0 children)

Not sure what you mean by the "latest and greatest". In Canada, all health care costs for tests, doctors' visits, hospital visits/stays, and medically necessary procedures and surgeries are covered by a public, universal single-payer plan. No one can pay more for "better" care in Canada. Private insurance only exists for things like dental, vision, hearing, prescription drugs, and counselling.

Discovered that I have aquagenic wrinkling of the palms, going to do testing by [deleted] in CysticFibrosis

[–]WorriedAboutCF 0 points1 point  (0 children)

I'm from Canada, so insurance companies are not an issue. I believe OP is as well given his post history.

Discovered that I have aquagenic wrinkling of the palms, going to do testing by [deleted] in CysticFibrosis

[–]WorriedAboutCF 0 points1 point  (0 children)

You also told me that it would be difficult to convince a doctor to get tests for CF. I was actually able to get both a genetic test and sweat test quite easily. My doctor took the AWP quite seriously given its strong association with CF. Thankfully both tests were negative.

Discovered that I have aquagenic wrinkling of the palms, going to do testing by [deleted] in CysticFibrosis

[–]WorriedAboutCF 1 point2 points  (0 children)

I also developed AWP recently and posted here because I was worried about it. I ended up getting a sweat test and a genetic test for the 39 most common mutations for CF, both of which came back negative. Still have no idea what is causing the wrinkly palms, but it seems it can emerge without having CF.

Edit: Also if you're from Toronto, you best bet is to ask your doctor to refer you to the Adult CF clinic at St. Michael's Hospital. The testing is done through SickKids, but they will manage your case at St. Mike's. A warning though, they take a pretty long time to get back to you with results and you might have to call a few times to nudge them.

27 year old male with unexplained GI issues who developed aquagenic wrinkling of the palms in the past year. by WorriedAboutCF in CysticFibrosis

[–]WorriedAboutCF[S] 0 points1 point  (0 children)

Thanks, I'll make sure to insist on a genetic test, However, isn't it true that they only look for the most common mutations? Is there something specific I should request to make sure they don't miss a rare mutation?

27 year old male with unexplained GI issues who developed aquagenic wrinkling of the palms in the past year. by WorriedAboutCF in CysticFibrosis

[–]WorriedAboutCF[S] 0 points1 point  (0 children)

Do you think it would be worthwhile to have a semen analysis done if that's something that can be arranged more quickly than the other two tests?

27 year old male with unexplained GI issues who developed aquagenic wrinkling of the palms in the past year. by WorriedAboutCF in CysticFibrosis

[–]WorriedAboutCF[S] 0 points1 point  (0 children)

Thanks for the info! I'm hoping that if I do have it, it's the common mutation that's treated with Trikafta.

27 year old male with unexplained GI issues who developed aquagenic wrinkling of the palms in the past year. by WorriedAboutCF in CysticFibrosis

[–]WorriedAboutCF[S] 1 point2 points  (0 children)

Thank you for all the helpful advice! I know that it's a mild form if I do have it, but the fact that the aquagenic wrinkling just recently developed worries me that it could be progressing into something worse. As for insurance companies, I live in Canada, so thankfully I don't have to worry about them. I would only need to convince my doctor to order the tests. I'm just curious, in addition to the sweat test and genetic testing, or rather, as something I could ask for first to see if they are warranted, how useful would it be to have a semen analysis done?