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Posted By : pablolr1 - 3/26/2015 12:03 PM
Hello. Greetings from Spain (excuse my English). I am a downcast father. My daughter is being refered to a CF center. She usually has phlegm and have had 4 rectal prolapses. Her sweat test is 24,3 mmol/L (negative). I am experencing GI troubles and poliposis & sinus problems from 2 years ago. My wife and I have negative 50 mutations tests (but they just cover 80% of the Spanish mutations). We are waiting for elastase and fat test (stools).
I am confident that your expertise can help me. Thank you and God bless you

Posted By : Gemsi - 3/29/2015 8:42 AM
Hi there,

Hopefully you will get the answers you need from the CF centre. They do sound like possible cf symptoms but then there are many diseases that could be similar. A sweat test result of 24 is very low and definitely not even in the Cf borderline range. Sweat tests aren't accurate though and they can be wrong. I'm not really sure what could be going on for you and your daughter, hopefully further testing and monitoring can bring some answers for you.

All the best
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Posted By : pablolr1 - 3/29/2015 9:01 AM
Thank you very much. I gailed with the test number. It was 27 (conductivity test) and, it is not sure, 12 for chloride. I am in panick and I can not wait until 15 may...
Thanks

Posted By : pablolr1 - 3/29/2015 9:03 AM
One question . when you say sweat test are not accurate... Do you mean" are" accurate?

Posted By : Gemsi - 3/29/2015 9:16 AM
Nope they are not accurate. A positive is normally a definite positive. However there a lot of factors that could throw a negative test. They might not have got enough sweat so they could be testing less sweat than they think which could bring back a negative result or the probe things might not be sat right. The result markers are usually:
0-40mmol/l - negative
40-60 - borderline
60+ - Positive

A genetic test is always more accurate. I think if someone doesn't have any known cf genes the possibility of them having CF is a 1 in 280 chance.

Hope this helps.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Posted By : pablolr1 - 3/29/2015 9:21 AM
Thanks. Defenitively i al terrorified. I ser in tour under sign that you had erythema nod. i just had one last year

Posted By : Gemsi - 3/29/2015 9:31 AM
I understand why you're scared the unknown is always so much scarier than the known. When I was 19 my muscles started wasting away with no explanation. The doctors thought the only reason could be muscular dystrophy, so they took a muscle biopsy and genetic tested it. They could see the breakdown of muscle but there was no genetic reason in the end. I'm still weak because of it and now it's just written as a Myopathy diagnosis. I still wish they had a cause or a reason for it, not that I want another disease but to be able to understand my I'm so weak would be nice. It's been pretty scary and dealing with hospitals and waiting on answers is one of the worst things.

I get erythema nodosum recurrent, everytime I get a chest infection or my bodies stressed out in anyway it comes back. If I get the flu jab or even a cat scratch then I get the bumps come up on whichever arm it was. With an infection or virus they come up on arms and legs. Nothing that I can the to treat it so just have to live with it and try to find the root of what's brought it on. Was yours a one off episode?
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Posted By : pablolr1 - 3/29/2015 9:55 AM
Mine was just one episode after a possible stomach infecction (after eatimg eggs por iba symptoms). It has never repeated...

Posted By : pablolr1 - 3/29/2015 10:02 AM
Por IBS symtomps i meant

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