Thanks for the comment.

Actually the testing is something about which I was hoping someone
could give some specific advice with regard to people my age. What
little reference I've found on the internet seems to indicate that
the gene variants that cause mild CF that can go undiagnosed this
late in life tend to be ones that aren't necessarily tested for in
the standard tests and that the sweat tests are also often negative
or borderline. I suspect that most general practioners and probably
even CF doctors without specific experience with this type might be
prone to miss the diagnosis.


--- In cysticfibrosissupport@yahoogroups.com, "Lisa Lee"
<lisaannlee@c...> wrote:
> I think what I would do first is just ask my general physician to
do a simple sweat test. Given the symptoms I don't see why he
wouldn't order one. Or try a pulmonologist, they will definitely
order the test. Once you find out if your positive or negative, you
can seek out a specialist. My docs love to order tests, but you'll
need one to know for sure. Lisa 43wcf
> ----- Original Message -----
> From: pjduncan
> To: cysticfibrosissupport@yahoogroups.com
> Sent: Monday, August 02, 2004 7:03 PM
> Subject: [Cystic Fibrosis Support] Request for info on adult
onset CF
>
>
> I would appreciate comments from anybody with knowledge about
adult
> onset (or adult diagnosed) CF. I'm a 37 year old male. For a
full
> year now I've had several symptoms that have yet to have a
specific
> diagnosis. A year ago I went to a doctor with both abdominal
pain
> and chest discomfort/pain. It was the first time I had been to
him
> and was confronted with one of those forms to list all
> diseases/symptoms that one suffers from. On that form I included
> many things which were either intermittent or ongoing problems
such
> as sinusitis, fatigue, sleep problems and digestive dysfunction.
I
> guess I appear too healthy because he was very dismissive and
said he
> couldn't think of a single thing that might lead to such a wide
> variety of symptoms and then subjected me to a psychological
> questionnaire. After this wonderful encounter I ignored the
symptoms
> for about 6 months before the feelings of chest pain got worse.
> Using a new doctor I've now had chest X-Ray, Chest CT with some
sort
> of injection, heart stress test, TB test and asthma evaluation.
All
> of these were negative or normal. Every time I have a day where
the
> pain is most noticeable I tend to do a bit of poking around the
> internet to see if I can find some leads. This time I ran across
> references to adult onset CF. So here's the question. With the
> below listed symptoms/history is it possible that I could have a
> variant of CF that's gone undiagnosed to age 37? and if so is
there
> a doctor in S. Cal that might have experience with adult onset
CF,
> such that they wouldn't simply write hypochondriac in my chart?
>
> 1 year history of intermittent chest discomfort/pain. Slight
pain
> usually occurs with laughing, yawning, coughing or deep breaths.
> Sometimes I tend to cough but rarely is anything coughed up. In
> general breathing seems a bit more difficult than in the past.
>
> I have fairly bad sinusitis with congestion and post nasal drip.
> Pulmonologist that ruled out asthma seems to think chest pain is
> secondary symptom of sinus problems. I went to an allergist
years
> ago that said the only thing I'm allergic to is dust mites. My
> sinusitis problems seem to occur even when in environments
presumably
> relatively free of dust mites.
>
> I have had surgery for nasal polyps 6-8 years ago. I understand
> polyps are potentially correlated with CF.
>
> I had a gallstone at age 25. This is very rare in skinny, young
men
> which is why it went misdiagnosed for a full year. I now
understand
> that this is also correlated with CF.
>
> I have had intermittent digestive problems for a number of
years.
> Also, for a long time I have noticed that stools often are
covered
> with thick mucus.
>
> I have had lower abdominal pain that is hard to pinpoint and
doesn't
> seem to feel like intestinal pain/cramping.
>
> I've had several urinary tract infections (rare in guys my age)
and
> was told I had a slightly enlarged prostate by urologist.
>
> I have Hashimoto's syndrome thyroid disease. I take synthroid
and my
> levels are normal.
>
> Despite having drug controlled normal thyroid levels, I have now
> started to feel fatigued on a regular basis.
>
> Sometimes I seem to be heat sensitive, feeling hotter and
sweating
> more than would seem appropriate for ambient temperature.
>
>
> Yahoo! Groups Sponsor
> ADVERTISEMENT
>
>
>
>
>
> --------------------------------------------------------------------
----------
> Yahoo! Groups Links
>
> a.. To visit your group on the web, go to:
> http://groups.yahoo.com/group/cysticfibrosissupport/
>
> b.. To unsubscribe from this group, send an email to:
> cysticfibrosissupport-unsubscribe@yahoogroups.com
>
> c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
>
>
> [Non-text portions of this message have been removed]