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Old 06-22-2012, 06:26 AM #51
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Sorry to be slow in reply (I was unavailable yesterday)...and also vague with my response.

But there is really no easy answer to your question. Without having a diagnosis of the exact lung condition no one would be able to answer about treatment, it effectiveness, and/or stopping progression.

Asthma (even adult onset from AI disease) is treatable. Interstitial lung disease is different based upon BOTH severity and what is the underlining AI condition. Without more info, it's impossible to guess.

Let's reassess your question after you get more results.



Quote:
Originally Posted by Idiopathic PN View Post
Particularly for echoes and en bloc, and those who are willing to share their insights :

My pulmonologist gave me several tests for autoimmune diseases.

As you know, my Sjorgren's, RA and Celiac/Gluten have been negative in my earlier tests for the PN. But, I have some symptoms for these conditions, though, it may not be conclusive. Example, for Sjorgren's - I have dry eyes but no dry mouth, for RA - I have nodules in my fingers and painful but findings was OA, for Celiac/Gluten - my result was negative, but I have neurological symptoms.

I still waiting for the results of the recent tests .

I am interested to know if the lung problem is autoimmune mediated, and treatment has been administered, is the the lung problem resolved (or at least stop the progression)?

Thank you.
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Old 06-22-2012, 06:41 AM #52
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Quote:
Originally Posted by en bloc View Post
Sorry to be slow in reply (I was unavailable yesterday)...and also vague with my response.

But there is really no easy answer to your question. Without having a diagnosis of the exact lung condition no one would be able to answer about treatment, it effectiveness, and/or stopping progression.

Asthma (even adult onset from AI disease) is treatable. Interstitial lung disease is different based upon BOTH severity and what is the underlining AI condition. Without more info, it's impossible to guess.

Let's reassess your question after you get more results.
Hi en bloc,

No need to apologize.

My appointment with the pulmo will be in July 23. The waiting is a torture.

The pulmo gave me a note on his prescription pad which says:

" Breathing test today shows some trend to reduced airflow; also it shows some restrictive to your breathing. We will review CT scan. We will check labwork for "arthritis" like reasons for restrictive of your lungs."

I read the difference between Obstructive and Restrictive Lung Diseases. I am so concerned that it seems I have both. I feel like fainting due anxiety.

I feel like I am boxed against the wall.
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Old 06-23-2012, 10:54 AM #53
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Quote:
Originally Posted by en bloc View Post
Sorry to be slow in reply (I was unavailable yesterday)...and also vague with my response.

But there is really no easy answer to your question. Without having a diagnosis of the exact lung condition no one would be able to answer about treatment, it effectiveness, and/or stopping progression.

Asthma (even adult onset from AI disease) is treatable. Interstitial lung disease is different based upon BOTH severity and what is the underlining AI condition. Without more info, it's impossible to guess.

Let's reassess your question after you get more results.
I got a copy of my CT scan dated June 15, 2012.

Below is the complete paragraph comparing the recent with my January 1, 2011 scan:

"In the interim the patient has developed progressive fibronodular densities in the medial segment of hte right middle lobe which is greaether than on the previous examination. This could represent superimposed infiltrate and pneumonia on chronic lung changes. The remainder of the examination in unchanged. The left lung remains clear. The heart is normal in size..."

IMPRESSION (June 15, 2012):

"Progressive fibronodular opacity in the medial segment of the right middle lobe which could represent an infectious or imflammatory process. The examination is otherwise unchanged and unremarkable.


Please, what does this mean?
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Old 06-23-2012, 12:16 PM #54
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Hi Ideopathic PN,
IMPRESSION (June 15, 2012):

"Progressive fibronodular opacity in the medial segment of the right middle lobe which could represent an infectious or imflammatory process. The examination is otherwise unchanged and unremarkable.


Please, what does this mean?

it is something that should be checked after a period of time by another ct to see if it has changed or is gone. i have numerous nodules in my lungs some rather large that i have checked by ct at regular intervals, at first every year and now every 2-3 years. dont stress over it too much. mine has not changed in years now. yours could just be infection related. get another a year from now if for nothing else than your own peace of mind.

as far as stress, i know that stress can make a medical condition worse and probably will due to resultant inflammation and how taxing it is on our energy reserves and immune systems. i just dont believe that stress causes these conditions though. anecdotally i have found that these type of conclusions by doctors that your symptoms or condition are due to stress is made far more with female patients than male patients. i just dont buy it.

with the problems that you are having it is natural that you would be worried and stressed. there would be something wrong with you psychologically if you werent. its not good or healthy for you longterm, however.

get a cat scan in a year, take the medication that was prescribed, monitor how you are doing breathing wise and relax a little and wait for the next cat scan or pulmonary test. there really is nothing much else you can do in the meantime except live as healthily as you can.

i dont know if i mentioned this or not but there is a support group for pn somewhere in the jacksonville area that might be able to give you ideas on what they are doing, medications, testing and other doctors. if you are interested send me a message.
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Old 06-24-2012, 02:07 PM #55
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Originally Posted by echoes long ago View Post
Hi Ideopathic PN,
IMPRESSION (June 15, 2012):

"Progressive fibronodular opacity in the medial segment of the right middle lobe which could represent an infectious or imflammatory process. The examination is otherwise unchanged and unremarkable.


Please, what does this mean?

it is something that should be checked after a period of time by another ct to see if it has changed or is gone. i have numerous nodules in my lungs some rather large that i have checked by ct at regular intervals, at first every year and now every 2-3 years. dont stress over it too much. mine has not changed in years now. yours could just be infection related. get another a year from now if for nothing else than your own peace of mind.

as far as stress, i know that stress can make a medical condition worse and probably will due to resultant inflammation and how taxing it is on our energy reserves and immune systems. i just dont believe that stress causes these conditions though. anecdotally i have found that these type of conclusions by doctors that your symptoms or condition are due to stress is made far more with female patients than male patients. i just dont buy it.

with the problems that you are having it is natural that you would be worried and stressed. there would be something wrong with you psychologically if you werent. its not good or healthy for you longterm, however.

get a cat scan in a year, take the medication that was prescribed, monitor how you are doing breathing wise and relax a little and wait for the next cat scan or pulmonary test. there really is nothing much else you can do in the meantime except live as healthily as you can.

i dont know if i mentioned this or not but there is a support group for pn somewhere in the jacksonville area that might be able to give you ideas on what they are doing, medications, testing and other doctors. if you are interested send me a message.
Hi echoes,

Yes, I am interested to know the support group in my area.

You dont know how much reassuring your email was. You are are right, I am experiencing anxieties but it is hard to avoid it. I am really trying so very hard not to be afraid but it keeps on creeping especially when the pain is on and breathing is hard.
Anyway, one day at a time.

I dont want to ask this question because I am scared of the answer but I have to face this head-on. Is fibronodular the same as intertitial lung disease?

It seems my result says that I have an ongoing inflammation. I dont know where my imflammation is coming from.

Thank you very very much, echoes.
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Old 06-24-2012, 03:26 PM #56
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Idiopathic PN, I feel like I may be responsible for much of your anxiety with respect to your medications. Please note how many people take these meds with no problems, the chances of your developing issues are likely very small.

People in my family are very sensitive to all kinds of drugs, we all struggle. I've had many/most of the side effects that are listed

"If you experience any of the following call your doctor immediately"

for a long time and my doctor just basically ignored them. I see other people who have been taken off the medication or changed to something different, I was not. I told him a year ago that I felt I might have to start Neurontin and he made a face and looked out the window..not a lot of help! I may be wrong about some of the things because I'm not a doctor and have tried to figure it out myself.

I have never seen a neurologist and really have no idea what is going on.

judi
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Old 06-24-2012, 06:57 PM #57
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Originally Posted by zygopetalum View Post
Idiopathic PN, I feel like I may be responsible for much of your anxiety with respect to your medications. Please note how many people take these meds with no problems, the chances of your developing issues are likely very small.

People in my family are very sensitive to all kinds of drugs, we all struggle. I've had many/most of the side effects that are listed

"If you experience any of the following call your doctor immediately"

for a long time and my doctor just basically ignored them. I see other people who have been taken off the medication or changed to something different, I was not. I told him a year ago that I felt I might have to start Neurontin and he made a face and looked out the window..not a lot of help! I may be wrong about some of the things because I'm not a doctor and have tried to figure it out myself.

I have never seen a neurologist and really have no idea what is going on.

judi
Judi,

I am taking now Symbicort, even with much hesitation at first, but yes I am taking it. It is something that I need to do. I am hoping that it will work for me.

My concern now is the fibronodular densities in my lungs.
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Old 06-24-2012, 08:44 PM #58
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did you say that you had tuberculosis in the past? fibronodular densities can be from bacterial infections such as TB as well if you breathed in a foreign object or had other infections since. i will pm you with the PN support group information.
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Old 06-24-2012, 09:00 PM #59
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did you say that you had tuberculosis in the past? fibronodular densities can be from bacterial infections such as TB as well if you breathed in a foreign object or had other infections since. i will pm you with the PN support group information.
Yes, I was diagnosed to have had ileocecal t.b. As far I could remember, I never had cough when I had that ileocecal t.b. But, I had a couple of bad bronchitis after that.

It says in the ct scan result that there may be "inflammation in process", I may have Sjorgren's. That is my only suspicion because of dry eyes. Lately, I am experiencing dry mouth. I dont know if my dry mouth, though, is caused by any of my medications or supplements.
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Old 06-24-2012, 11:53 PM #60
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I have to wonder about sarcoidosis.... Did you have an ACE test when you had your blood work?
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