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I am currently at njh. Great place, glad i came. Have had all kinds of test. Wondering if any of you had a positive sweat test and high anti nuclear score. Have paid for the gene testing for cystic fibrosis. It takes a few weeks for the results. I was shocked to have high levels. Doctor says all the autoimmune test are not back yet but so far they have been normal. Don’t understand why my number is so high. I leave tomorrow after some swallowing test. I had neck cancer so for me this is appropriate.
Any thoughts would be helpful.
Miriam
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My ana was 1:280, my numbers for the chloride where above 70 and the sodium in the 30.
It gives me a better feeling that all will be ok. Dr depending on results will send me to a rheumatologist for more testing. Will see. I just felt like what how can i be high and need a cf gene test. Anyway results wont be in for a few weeks.
It must mean something that people have positive sweat tests but negative genetic testing. Would be a good question for one of the Drs at NJH.
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2 ReactionsI was there in December and left 3 days early as well. All the tests were finished and there was nothing to follow up on.
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1 ReactionI fly Delta and when I booked my flights the Rep said if I need to change for medical purposes they always work with you without the penalties. Hopefully, that is true.
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3 ReactionsI found this online: False positives are rare, but sweat chloride may elevate falsely in other pathologic syndromes and situations. https://www.ncbi.nlm.nih.gov/books/NBK547728/
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1 ReactionI was reading your posting in this thread about the genetic testing for cf you had performed through NJH. First of all, I hope that you received good news once your received the results instead of a diagnosis of cf. I just returned from there and while I was there, much to my surprise at age 67, I also tested positive for CF with chloride reading of 64. They told me it would be two weeks to get the results from the genetic testing. It has been a little over two weeks, and I am becoming restless from not knowing the results. I am hoping you could tell me how long it actually took to get your results back and were they reported on the portal or did you have to wait to get a call from your doc? Secondly, and I know this is personal and please do not feel like you need to answer if wish not to do so, if your test returned positive, how are you doing with the diagnosis? What steps are you taking now you know? Any advice for someone who may just be a few weeks behind you in being diagnosed?
Good morning.
The results took a few weeks. No they don’t put the results into the portal. I got a message from the doctor that it was negative. I was relieved. She told me it happens that it is a false positive. I hope this helps. Hang in there. The waiting for results is always hard.
I still don’t understand why i was positive. I thought it was odd. Wishing you good results.
As I recall it took a few weeks to get the genetic results. I was not given any other test for CF. Just the genetic and my pulmo did the most advanced genetic option (very expensive). My results were negative and chances are yours will be too. It is very rare to get a diagnosis so late in life. But if they are positive there are new options now for CF that can make a big difference.
I also had a positive sweat test and Dr. Griffith looked stunned when he read it. I have not received my genetic tests yet. This is odd.
So relieved for you that it turned out as a false positive. Interestingly, I have not accepted the sweat test results as diagnostic because it just doesn't seem to fit. It's not like trying to put a square peg in a round hole but maybe an oblong one in a round hole. However, as the the time ticks, I begin to wonder if it could be correct. It shouldn't be as long of a wait as what is already behind me. Thank you so much for your response; it was a boost of hope.