Received original diagnosis paperwork from 1974

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meech

New member
Since my first post here I have received the original hospital file from 1974. I had 3 sweat tests done that i can find and the results were
#1 right arm 62 & 65, left arm 94.
#2 right arm 115, 100 left arm 82, 100.
#3 right arm 105,195 left arm 97, 97.

Is it normal to have such fluctuations on sweat tests?

72 hour fecal fat test results looked normal from what I could tell but duodenal aspirate came back with no tryptic activity and no bicarbonate detected.
I was wondering if anyone knows what this means?

I was culturing staphylococcus and enterobacter.

This was all over a 5 month period. Does this info look like it would have supported the CF diagnosis at the time? Or does anyone have any other ideas of another direction this could point? I know people here aren't doctors but from reading past post I also know you are all very knowledgeable. I do have an appointment booked already but trying to learn what I can before then. Thanks very much.
 
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Aboveallislove

Super Moderator
I'm almost positive those are positive sweat tests...did they not diagnosis you with cf??? You can look at cff.org page for sweat test values. My understanding is the pancreas handles bicarbonate and that cf blocks the ducts so the bicarbonate can't et out so that might be what that means. Have you hAd you mutations determined? If not, I'd ask for full sequencing ASAP as some mutations can benefit from kalydeco. If you haven't I believe cff has a find that pays for it. Good luck.
 
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meech

New member
Yes, I was actually diagnosed and treated until I was10 years old, when I didn't appear as ill as the other children at the clinic it was decided I didn't have it. This was in the mid 1980s, so I have not had genetic testing yet but have an appointment for early September with the local cf clinic. Thank you, I was having a difficult time understanding what I was reading about the bicarbonate and how the sweat test results varied so much from 62-195!
 
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lifeisgood729

Guest
I was diagnosed in 1972, and my sweat test numbers were in the mid-60 range, I think. When I was a teenager (also in the mid-80's) I was so healthy that my doctor also said he wondered if I really had CF. He never "undiagnosed" me, though. Now I know that my mutations are DeltaF508 and 3849+10kb, C-T. The second mutation tends to lead to pancreatic sufficiency, so I never had a problem with digestion, which might have been part of the reason I was so healthy. I think sweat test numbers over 60 are considered positive diagnosis for CF, so it's surprising your clinic decided you don't have it.

Martha
46 w/CF
 
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meech

New member
I think my mother had a lot to do with convincing my cf doc to drop me, from what I understand she pestered him and questioned the diagnosis for a year or two before he agreed. I went through very bad health my first year of life then it seemed to stabilize through my childhood. I now have a lot of medical issues and am currently seeing a neurologist, hematologist, and I am on my second allergist/immunologist. Part of me wonders if my current issues trace back to my cf diagnosis (or whatever it actually was) I was actually on pancreatic enzymes, nebulizers, and chest physio till I was about 8 years old I believe. Thanks for the response.
 
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JustaCFmom

New member
I hope you get answers

meech said:
I think my mother had a lot to do with convincing my cf doc to drop me, from what I understand she pestered him and questioned the diagnosis for a year or two before he agreed. I went through very bad health my first year of life then it seemed to stabilize through my childhood. I now have a lot of medical issues and am currently seeing a neurologist, hematologist, and I am on my second allergist/immunologist. Part of me wonders if my current issues trace back to my cf diagnosis (or whatever it actually was) I was actually on pancreatic enzymes, nebulizers, and chest physio till I was about 8 years old I believe. Thanks for the response.
Click to expand...

Those sweat test results are very suspicious and could mean you really do have CF. I have 3 kids with CF that got diagnosed later in life (only because the 14 yr old got very sick and ultimately diagnosed). CF has a spectrum. My 24 year old has fantastic lung functions (125% predicted that's like a percentile) and no digestive issues.

That being said, my 5 year old had been screened & she is NOT even a carrier. She was coughing the whole winter in 2012. We redid the tests and HER sweat test was positive. So, sweat tests are an art & the genetic test can help clarify things.

Good luck! Just know, if you do have CF the treatments are a huge help. My daughter gained 20 kilos (she was terribly underweight at the time) and her lung functions went from 75% pred to over 100%. She looks and feels healthy now.
 
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JustaCFmom

New member
Hey! 3849+10kb, C-T is one of our mutations also! I am so grateful my kids have this "milder" version and they have been diagnosed early on.

Who knows how much damage there would have been until they would have been diagnosed, if not for the shrewd doctor who sent us to test my daughter?!
 
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