First CF clinic visit

[Pianist]

So, went to a CF center (one of the "top" ones). The visit was under a research protocol. Kind of frustrated. Before I went I had: 55,53 sweat chloride, missing vas defs, 508 detected from 35 mut test, low vit D, and symptoms that are under the list for CF. The junior doctor told me that lots of people have 508 and s/he's leaning more towards allergies. Under the research protocol they were going to do another 35 mut test and I pushed for the Ambry test and signed paperwork to pay for it (thru insurance), because it seems I will be in constant limbo until this happens. They did a PFT which came out excellent. 100% for primary and 85% for what the tech said was "small airways". After doing an inhaler the "small airways" one was 115%(?). S/he said a ~30% increase. Primary was still 100%. This was no surprise because I've always felt better after doing an inhaler. Lung xray came out normal. They did a couple tests for Primary Ciliary Dyskinesia. Later the senior doctor said that with the vas def, gene test and my symptoms s/he thinks I very likely have a CF variant, but since I don't have lung damage at 36, I wont likely have to worry about lung issues right now. The lung damage would not just "appear one day". S/he also said since the lung issues are so mild, the other secondary problems shouldn't be that big of a deal either. When the sr doc was gone I asked the jr doc about my very low vit D and how over the past few months there's an area in my spine that feels really sore and uncomfortable. Also, I've been feeling more sick and majorly fatigued lately. Dark areas under my eyes have been getting worse. S/he said if I was her "clinical patient" she would suppliment my vit D. I'm kinda irritated because they didn't check my ADEKs, and they didn't do a bone density scan like another clinic said they would do. I asked the jr doc about the bone thing and s/he said since I'm active and going to the gym I shouldn't worry about it bone issues.

 

[Pianist]

So, went to a CF center (one of the "top" ones). The visit was under a research protocol. Kind of frustrated. Before I went I had: 55,53 sweat chloride, missing vas defs, 508 detected from 35 mut test, low vit D, and symptoms that are under the list for CF. The junior doctor told me that lots of people have 508 and s/he's leaning more towards allergies. Under the research protocol they were going to do another 35 mut test and I pushed for the Ambry test and signed paperwork to pay for it (thru insurance), because it seems I will be in constant limbo until this happens. They did a PFT which came out excellent. 100% for primary and 85% for what the tech said was "small airways". After doing an inhaler the "small airways" one was 115%(?). S/he said a ~30% increase. Primary was still 100%. This was no surprise because I've always felt better after doing an inhaler. Lung xray came out normal. They did a couple tests for Primary Ciliary Dyskinesia. Later the senior doctor said that with the vas def, gene test and my symptoms s/he thinks I very likely have a CF variant, but since I don't have lung damage at 36, I wont likely have to worry about lung issues right now. The lung damage would not just "appear one day". S/he also said since the lung issues are so mild, the other secondary problems shouldn't be that big of a deal either. When the sr doc was gone I asked the jr doc about my very low vit D and how over the past few months there's an area in my spine that feels really sore and uncomfortable. Also, I've been feeling more sick and majorly fatigued lately. Dark areas under my eyes have been getting worse. S/he said if I was her "clinical patient" she would suppliment my vit D. I'm kinda irritated because they didn't check my ADEKs, and they didn't do a bone density scan like another clinic said they would do. I asked the jr doc about the bone thing and s/he said since I'm active and going to the gym I shouldn't worry about it bone issues.

 

[Pianist]

So, went to a CF center (one of the "top" ones). The visit was under a research protocol. Kind of frustrated. Before I went I had: 55,53 sweat chloride, missing vas defs, 508 detected from 35 mut test, low vit D, and symptoms that are under the list for CF. The junior doctor told me that lots of people have 508 and s/he's leaning more towards allergies. Under the research protocol they were going to do another 35 mut test and I pushed for the Ambry test and signed paperwork to pay for it (thru insurance), because it seems I will be in constant limbo until this happens. They did a PFT which came out excellent. 100% for primary and 85% for what the tech said was "small airways". After doing an inhaler the "small airways" one was 115%(?). S/he said a ~30% increase. Primary was still 100%. This was no surprise because I've always felt better after doing an inhaler. Lung xray came out normal. They did a couple tests for Primary Ciliary Dyskinesia. Later the senior doctor said that with the vas def, gene test and my symptoms s/he thinks I very likely have a CF variant, but since I don't have lung damage at 36, I wont likely have to worry about lung issues right now. The lung damage would not just "appear one day". S/he also said since the lung issues are so mild, the other secondary problems shouldn't be that big of a deal either. When the sr doc was gone I asked the jr doc about my very low vit D and how over the past few months there's an area in my spine that feels really sore and uncomfortable. Also, I've been feeling more sick and majorly fatigued lately. Dark areas under my eyes have been getting worse. S/he said if I was her "clinical patient" she would suppliment my vit D. I'm kinda irritated because they didn't check my ADEKs, and they didn't do a bone density scan like another clinic said they would do. I asked the jr doc about the bone thing and s/he said since I'm active and going to the gym I shouldn't worry about it bone issues.

 

[Pianist]

So, went to a CF center (one of the "top" ones). The visit was under a research protocol. Kind of frustrated. Before I went I had: 55,53 sweat chloride, missing vas defs, 508 detected from 35 mut test, low vit D, and symptoms that are under the list for CF. The junior doctor told me that lots of people have 508 and s/he's leaning more towards allergies. Under the research protocol they were going to do another 35 mut test and I pushed for the Ambry test and signed paperwork to pay for it (thru insurance), because it seems I will be in constant limbo until this happens. They did a PFT which came out excellent. 100% for primary and 85% for what the tech said was "small airways". After doing an inhaler the "small airways" one was 115%(?). S/he said a ~30% increase. Primary was still 100%. This was no surprise because I've always felt better after doing an inhaler. Lung xray came out normal. They did a couple tests for Primary Ciliary Dyskinesia. Later the senior doctor said that with the vas def, gene test and my symptoms s/he thinks I very likely have a CF variant, but since I don't have lung damage at 36, I wont likely have to worry about lung issues right now. The lung damage would not just "appear one day". S/he also said since the lung issues are so mild, the other secondary problems shouldn't be that big of a deal either. When the sr doc was gone I asked the jr doc about my very low vit D and how over the past few months there's an area in my spine that feels really sore and uncomfortable. Also, I've been feeling more sick and majorly fatigued lately. Dark areas under my eyes have been getting worse. S/he said if I was her "clinical patient" she would suppliment my vit D. I'm kinda irritated because they didn't check my ADEKs, and they didn't do a bone density scan like another clinic said they would do. I asked the jr doc about the bone thing and s/he said since I'm active and going to the gym I shouldn't worry about it bone issues.

 

[Pianist]

So, went to a CF center (one of the "top" ones). The visit was under a research protocol. Kind of frustrated. Before I went I had: 55,53 sweat chloride, missing vas defs, 508 detected from 35 mut test, low vit D, and symptoms that are under the list for CF. The junior doctor told me that lots of people have 508 and s/he's leaning more towards allergies. Under the research protocol they were going to do another 35 mut test and I pushed for the Ambry test and signed paperwork to pay for it (thru insurance), because it seems I will be in constant limbo until this happens. They did a PFT which came out excellent. 100% for primary and 85% for what the tech said was "small airways". After doing an inhaler the "small airways" one was 115%(?). S/he said a ~30% increase. Primary was still 100%. This was no surprise because I've always felt better after doing an inhaler. Lung xray came out normal. They did a couple tests for Primary Ciliary Dyskinesia. Later the senior doctor said that with the vas def, gene test and my symptoms s/he thinks I very likely have a CF variant, but since I don't have lung damage at 36, I wont likely have to worry about lung issues right now. The lung damage would not just "appear one day". S/he also said since the lung issues are so mild, the other secondary problems shouldn't be that big of a deal either. When the sr doc was gone I asked the jr doc about my very low vit D and how over the past few months there's an area in my spine that feels really sore and uncomfortable. Also, I've been feeling more sick and majorly fatigued lately. Dark areas under my eyes have been getting worse. S/he said if I was her "clinical patient" she would suppliment my vit D. I'm kinda irritated because they didn't check my ADEKs, and they didn't do a bone density scan like another clinic said they would do. I asked the jr doc about the bone thing and s/he said since I'm active and going to the gym I shouldn't worry about it bone issues.

 

[lightNlife]

I'm glad you were able to see a clinician, but sorry to hear you didn't really get any definitive answers. Sounds like they're operating with a lot of guesswork. That must be frustrating for you. I hope at the very least you'll get some positive things for dealing with the myriad of symptoms you're having. Your sweat results do indicate "borderline" cf, and with the vas thing seems to point to it even further. But I'm not the doctor <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm glad you have made it this far without lung damage. That is a HUGE positive. Perhaps you'll be able to avoid all the expensive treatments, tuneups and medications that CFers deal with. For your sake though, I hope you find answers as to what the true underlying issue is. I especially hope the vitamin D supplements work out for you.

Hang in there. We're still here for you even if it's not a true CF diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lightNlife]

I'm glad you were able to see a clinician, but sorry to hear you didn't really get any definitive answers. Sounds like they're operating with a lot of guesswork. That must be frustrating for you. I hope at the very least you'll get some positive things for dealing with the myriad of symptoms you're having. Your sweat results do indicate "borderline" cf, and with the vas thing seems to point to it even further. But I'm not the doctor <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm glad you have made it this far without lung damage. That is a HUGE positive. Perhaps you'll be able to avoid all the expensive treatments, tuneups and medications that CFers deal with. For your sake though, I hope you find answers as to what the true underlying issue is. I especially hope the vitamin D supplements work out for you.

Hang in there. We're still here for you even if it's not a true CF diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lightNlife]

I'm glad you were able to see a clinician, but sorry to hear you didn't really get any definitive answers. Sounds like they're operating with a lot of guesswork. That must be frustrating for you. I hope at the very least you'll get some positive things for dealing with the myriad of symptoms you're having. Your sweat results do indicate "borderline" cf, and with the vas thing seems to point to it even further. But I'm not the doctor <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm glad you have made it this far without lung damage. That is a HUGE positive. Perhaps you'll be able to avoid all the expensive treatments, tuneups and medications that CFers deal with. For your sake though, I hope you find answers as to what the true underlying issue is. I especially hope the vitamin D supplements work out for you.

Hang in there. We're still here for you even if it's not a true CF diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lightNlife]

I'm glad you were able to see a clinician, but sorry to hear you didn't really get any definitive answers. Sounds like they're operating with a lot of guesswork. That must be frustrating for you. I hope at the very least you'll get some positive things for dealing with the myriad of symptoms you're having. Your sweat results do indicate "borderline" cf, and with the vas thing seems to point to it even further. But I'm not the doctor <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm glad you have made it this far without lung damage. That is a HUGE positive. Perhaps you'll be able to avoid all the expensive treatments, tuneups and medications that CFers deal with. For your sake though, I hope you find answers as to what the true underlying issue is. I especially hope the vitamin D supplements work out for you.

Hang in there. We're still here for you even if it's not a true CF diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lightNlife]

I'm glad you were able to see a clinician, but sorry to hear you didn't really get any definitive answers. Sounds like they're operating with a lot of guesswork. That must be frustrating for you. I hope at the very least you'll get some positive things for dealing with the myriad of symptoms you're having. Your sweat results do indicate "borderline" cf, and with the vas thing seems to point to it even further. But I'm not the doctor <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm glad you have made it this far without lung damage. That is a HUGE positive. Perhaps you'll be able to avoid all the expensive treatments, tuneups and medications that CFers deal with. For your sake though, I hope you find answers as to what the true underlying issue is. I especially hope the vitamin D supplements work out for you.

Hang in there. We're still here for you even if it's not a true CF diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2lillian]

Pianist since the vitamin levels and bone tests are often not part of the typical diagnostic screening what you experienced was quite normal. Once you get a diagnosis they would look into those things. In the mean time if you want a dexa scan you can request one through your regular doctor and supplement your vitamin levels yourself would be advisable with additional calcium as well.

It can take up to 6 weeks to get your test back but good luck (either way) for good treatment options to open up.

PS even if you have CF it would be highly advisable to get to an allergist if you have not already.

 

[mom2lillian]

Pianist since the vitamin levels and bone tests are often not part of the typical diagnostic screening what you experienced was quite normal. Once you get a diagnosis they would look into those things. In the mean time if you want a dexa scan you can request one through your regular doctor and supplement your vitamin levels yourself would be advisable with additional calcium as well.

It can take up to 6 weeks to get your test back but good luck (either way) for good treatment options to open up.

PS even if you have CF it would be highly advisable to get to an allergist if you have not already.

 

[mom2lillian]

Pianist since the vitamin levels and bone tests are often not part of the typical diagnostic screening what you experienced was quite normal. Once you get a diagnosis they would look into those things. In the mean time if you want a dexa scan you can request one through your regular doctor and supplement your vitamin levels yourself would be advisable with additional calcium as well.

It can take up to 6 weeks to get your test back but good luck (either way) for good treatment options to open up.

PS even if you have CF it would be highly advisable to get to an allergist if you have not already.

 

[mom2lillian]

Pianist since the vitamin levels and bone tests are often not part of the typical diagnostic screening what you experienced was quite normal. Once you get a diagnosis they would look into those things. In the mean time if you want a dexa scan you can request one through your regular doctor and supplement your vitamin levels yourself would be advisable with additional calcium as well.

It can take up to 6 weeks to get your test back but good luck (either way) for good treatment options to open up.

PS even if you have CF it would be highly advisable to get to an allergist if you have not already.

 

[mom2lillian]

Pianist since the vitamin levels and bone tests are often not part of the typical diagnostic screening what you experienced was quite normal. Once you get a diagnosis they would look into those things. In the mean time if you want a dexa scan you can request one through your regular doctor and supplement your vitamin levels yourself would be advisable with additional calcium as well.

It can take up to 6 weeks to get your test back but good luck (either way) for good treatment options to open up.

PS even if you have CF it would be highly advisable to get to an allergist if you have not already.