1. < MAC & Bronchiectasis

Njh visit

Posted by msk @msk, Apr 2, 2023

Hello
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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mdf | @mdf | May 9, 2023
In reply to @irenea8 "As I recall it took a few weeks to get the genetic results. I was not..." + (show)
@irenea8

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.

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Thank you for this response. Yes, the new options do sound promising if you have the right gene mutation, and from what I was told, the care from the CF Foundation is impeccable. Hoping I and any others receiving a positive sweat test don't have to find out! Again thank you!

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mdf | @mdf | May 9, 2023
In reply to @tinaesims "I also had a positive sweat test and Dr. Griffith looked stunned when he read it...." + (show)
@tinaesims

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.

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Thank you for your response, Tina. Hope we both receive the best news once it comes!

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tconz | @tconz | May 9, 2023
In reply to @tinaesims "I also had a positive sweat test and Dr. Griffith looked stunned when he read it...." + (show)
@tinaesims

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.

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I am still at NJH and received a very high result from my sweat test. I too will have to wait the genetic testing results. Did they send anyone to have a consultation with the CF department here?

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2 replies
Tina Sims | @tinaesims | May 9, 2023
In reply to @tconz "I am still at NJH and received a very high result from my sweat test. I..." + (show)
@tconz

I am still at NJH and received a very high result from my sweat test. I too will have to wait the genetic testing results. Did they send anyone to have a consultation with the CF department here?

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Yes, Dr. Lommentzch. I'm not sure if I spelled it right. I loved her!

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1 reply
sue22 | @sue22 | May 9, 2023

Hi Tina and Terri
Would you care to share your level on the sweat chloride test? Mine was 52 which is quite elevated ( not the 60 + required for CF diagnosis), but my genetic test was negative for CF, one positive gene for PCD ( Primary Ciliary Dyskinesia). My belief is that there are other mutations for CF that are yet discovered as I have other symptoms consistent with CF. Thanks if you wish to share more.

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1 reply
tconz | @tconz | May 9, 2023
In reply to @sue22 "Hi Tina and Terri Would you care to share your level on the sweat chloride test?..." + (show)
@sue22

Hi Tina and Terri
Would you care to share your level on the sweat chloride test? Mine was 52 which is quite elevated ( not the 60 + required for CF diagnosis), but my genetic test was negative for CF, one positive gene for PCD ( Primary Ciliary Dyskinesia). My belief is that there are other mutations for CF that are yet discovered as I have other symptoms consistent with CF. Thanks if you wish to share more.

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My level was 89 which is quite high. Just have to wait 2 weeks to get answers.

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gjaleski | @gjaleski | May 9, 2023
In reply to @muon "Hi, I just started at NJH and also have positive sweat test and ANA. These were..." + (show)
@muon

Hi, I just started at NJH and also have positive sweat test and ANA. These were posted on the portal. My follow up visit is June 1, no information on next steps yet. Let me know what the recommendations are.

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Please what is NJH? What are sweat tests used for?

Thanks

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1 reply
muon | @muon | May 9, 2023
In reply to @gjaleski "Please what is NJH? What are sweat tests used for? Thanks" + (show)
@gjaleski

Please what is NJH? What are sweat tests used for?

Thanks

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Sweat tests are for cystic fibrosis or any of the many variants. National Jewish Hospital known for its respiratory research. It is located in Denver

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mdf | @mdf | May 9, 2023
In reply to @tconz "I am still at NJH and received a very high result from my sweat test. I..." + (show)
@tconz

I am still at NJH and received a very high result from my sweat test. I too will have to wait the genetic testing results. Did they send anyone to have a consultation with the CF department here?

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tconz, I see where Tina said they sent someone to have a consultation with the CF department for her, but that was not the case for me. I just got back from there at the end of April. In my case, the plan is talk with the CF dept there on a return trip in a few months if the genetic test comes back confirming the sweat test diagnosis (or at least that was the plan the last time I spoke to my doc). Hope your trip gives you answers and a good treatment plan whether it is tweaking something current or starting over.

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1 reply
tconz | @tconz | May 9, 2023
In reply to @mdf "tconz, I see where Tina said they sent someone to have a consultation with the CF..." + (show)
@mdf

tconz, I see where Tina said they sent someone to have a consultation with the CF department for her, but that was not the case for me. I just got back from there at the end of April. In my case, the plan is talk with the CF dept there on a return trip in a few months if the genetic test comes back confirming the sweat test diagnosis (or at least that was the plan the last time I spoke to my doc). Hope your trip gives you answers and a good treatment plan whether it is tweaking something current or starting over.

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They are trying to get me into CF for Consultation before I leave but not sure it will happen. So impressed with everyone here!

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