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Well Bruce...today is a big resounding...

DAMNIT! no, double DAMNIT! for your latest news. I feel sad.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Confusion - Report from University of Chicago

As many know I recently went to the University of Chicago MedicalCenter, one of the 13 Centers of Excellence for IPF. Previously I hadthe opinions of the three local pulmonologists and the pathology reportsfrom the local pathologist and Mayo Clinic in sdale, AZ.Now the opinion before was straight forward UIP/IPF and no believe thatI had an autoimmune disease or connective tissue disease as perhaps moreappropriately labelled. However, in the Mayo pathology report there werea couple of items mentioned as atypical. Plus I had some blood tests abit out of range, but that was considered a normal variable. Last, I hadalso experienced swollen lymph nodes and swallowing and esophagusproblems.So I got a return call from the nursing coordinator today and she readfrom the report that is in the mail. Their findings confirm what theyhad as suspicions all along and that is they believe that I do have anunidentified connective tissue disease. It may well have just notpresented itself fully yet. Also, I've heard they can show first andthen be masked by UIP/IPF. Now, I don't have the report yet so can'tfully review all the findings and details. After I have reviewed, I willhave more discussions with them and they will talk to my localpulmonologist.The significance is that if it is caused by a connective tissue disease,then by treating that disease you can slow down the progression of theIPF. Which of course brings us to the treatment, which is prednisone.The recommendation is to start with small doses and then to reducefurther from that. didn't know what small doses meant but suspectits something like 30 mg (maybe 40) reducing to 20 mg as opposed to the60 mg often used for PF.So, I'll start working on my long list of questions when I get thereport. Until then, I'll enjoy San . But looks like I'm going tofind myself weighing probabilities and quality vs. quantity of lifeunder best and worst cases. I already have a million scenarios andquestions to cover with the doctor. For instance, if I started with 30mg but found within the first 30 days it was affecting my mental healthenough to want off, how long would it take to get off, having used itless than 30 days. At what point do you cross the line that creates along agonizing period of withdrawal. What are the odds their guess ofconnective tissue is right? What if the prednisone works? What if itdoesn't and I've just sacrificed quality of life? Since this opinion isdifferent than others, should I now have it verified through anotheropinion from Duke or Emory, either in person or by sending the tests andrecords and slides to one of them?My neurologist was concerned several years ago about autoimmune butrheumatologist found no indication. It's always lurked in the back of mymind. When she just heard my history over the phone, Brown,nursing coordinator in Chicago, immediately had suspicions, which is whyshe chose Dr. Strek who is their expert in PF and Autoimmune diseases.Now i know why I never liked science in school. I sensed that it wasn'tdefinitive like math is. I just didn't know it at the time. It's morelike art and I couldn't draw anything if my life depended on it.....lol

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Sher

Nothing to be sad over....I still have the choice to just keep on as I

am. Now have other choices to consider. I'll do it slowly and carefully

with a trillion questions (up from a million a few minutes ago).

>

> Well Bruce...today is a big resounding...

> DAMNIT! no, double DAMNIT! for your latest news. I feel sad.

> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

> Don't fret about tomorrow, God is already there!

>

> Confusion - Report from University of

Chicago

>

>

>

> As many know I recently went to the University of Chicago Medical

> Center, one of the 13 Centers of Excellence for IPF. Previously I had

> the opinions of the three local pulmonologists and the pathology

reports

> from the local pathologist and Mayo Clinic in sdale, AZ.

>

> Now the opinion before was straight forward UIP/IPF and no believe

that

> I had an autoimmune disease or connective tissue disease as perhaps

more

> appropriately labelled. However, in the Mayo pathology report there

were

> a couple of items mentioned as atypical. Plus I had some blood tests a

> bit out of range, but that was considered a normal variable. Last, I

had

> also experienced swollen lymph nodes and swallowing and esophagus

> problems.

>

> So I got a return call from the nursing coordinator today and she read

> from the report that is in the mail. Their findings confirm what they

> had as suspicions all along and that is they believe that I do have an

> unidentified connective tissue disease. It may well have just not

> presented itself fully yet. Also, I've heard they can show first and

> then be masked by UIP/IPF. Now, I don't have the report yet so can't

> fully review all the findings and details. After I have reviewed, I

will

> have more discussions with them and they will talk to my local

> pulmonologist.

>

> The significance is that if it is caused by a connective tissue

disease,

> then by treating that disease you can slow down the progression of the

> IPF. Which of course brings us to the treatment, which is prednisone.

> The recommendation is to start with small doses and then to reduce

> further from that. didn't know what small doses meant but

suspect

> its something like 30 mg (maybe 40) reducing to 20 mg as opposed to

the

> 60 mg often used for PF.

>

> So, I'll start working on my long list of questions when I get the

> report. Until then, I'll enjoy San . But looks like I'm going

to

> find myself weighing probabilities and quality vs. quantity of life

> under best and worst cases. I already have a million scenarios and

> questions to cover with the doctor. For instance, if I started with 30

> mg but found within the first 30 days it was affecting my mental

health

> enough to want off, how long would it take to get off, having used it

> less than 30 days. At what point do you cross the line that creates a

> long agonizing period of withdrawal. What are the odds their guess of

> connective tissue is right? What if the prednisone works? What if it

> doesn't and I've just sacrificed quality of life? Since this opinion

is

> different than others, should I now have it verified through another

> opinion from Duke or Emory, either in person or by sending the tests

and

> records and slides to one of them?

>

> My neurologist was concerned several years ago about autoimmune but

> rheumatologist found no indication. It's always lurked in the back of

my

> mind. When she just heard my history over the phone, Brown,

> nursing coordinator in Chicago, immediately had suspicions, which is

why

> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.

>

> Now i know why I never liked science in school. I sensed that it

wasn't

> definitive like math is. I just didn't know it at the time. It's more

> like art and I couldn't draw anything if my life depended on

it.....lol

>

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Bruce,

Well you do have a dilemma, don't you? It sounds somewhat familiar in that Dr. on at Duke believes I have an "undifferentiated connective tissue disease". It has not been specifically identified and likely won't be unless it flares up. I have a few tantalizing symptoms and some atypical bloodwork also but nothing definitive...yet.

They have opted not to treat me presently because I am stable. When/if I begin to deteriorate I am told I will be treated "aggressively" with prednisone and possibly Immuran depending on what happens when/if things flare. I don't really have a problem with going on Pred again because I had a relatively good experience first time around. I did have side effects but they were managed aggressively, something I would insist on once again.

You my friend are in a different situation. Prednisone is a horse of a different color for you because of your history. Caution is your watchword and that's as it should be. If it were me Bruce, I would probably go for another opinion. Since you're going to be in the area, Duke might be a good idea. I'm very happy with Dr. on. Or maybe your own doctor might recommend someone at Duke.

This is no damn fun, you know?

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Confusion - Report from University of Chicago

As many know I recently went to the University of Chicago MedicalCenter, one of the 13 Centers of Excellence for IPF. Previously I hadthe opinions of the three local pulmonologists and the pathology reportsfrom the local pathologist and Mayo Clinic in sdale, AZ.Now the opinion before was straight forward UIP/IPF and no believe thatI had an autoimmune disease or connective tissue disease as perhaps moreappropriately labelled. However, in the Mayo pathology report there werea couple of items mentioned as atypical. Plus I had some blood tests abit out of range, but that was considered a normal variable. Last, I hadalso experienced swollen lymph nodes and swallowing and esophagusproblems.So I got a return call from the nursing coordinator today and she readfrom the report that is in the mail. Their findings confirm what theyhad as suspicions all along and that is they believe that I do

have anunidentified connective tissue disease. It may well have just notpresented itself fully yet. Also, I've heard they can show first andthen be masked by UIP/IPF. Now, I don't have the report yet so can'tfully review all the findings and details. After I have reviewed, I willhave more discussions with them and they will talk to my localpulmonologist.The significance is that if it is caused by a connective tissue disease,then by treating that disease you can slow down the progression of theIPF. Which of course brings us to the treatment, which is prednisone.The recommendation is to start with small doses and then to reducefurther from that. didn't know what small doses meant but suspectits something like 30 mg (maybe 40) reducing to 20 mg as opposed to the60 mg often used for PF.So, I'll start working on my long list of questions when I get thereport. Until then, I'll enjoy San

. But looks like I'm going tofind myself weighing probabilities and quality vs. quantity of lifeunder best and worst cases. I already have a million scenarios andquestions to cover with the doctor. For instance, if I started with 30mg but found within the first 30 days it was affecting my mental healthenough to want off, how long would it take to get off, having used itless than 30 days. At what point do you cross the line that creates along agonizing period of withdrawal. What are the odds their guess ofconnective tissue is right? What if the prednisone works? What if itdoesn't and I've just sacrificed quality of life? Since this opinion isdifferent than others, should I now have it verified through anotheropinion from Duke or Emory, either in person or by sending the tests andrecords and slides to one of them?My neurologist was concerned several years ago about autoimmune

butrheumatologist found no indication. It's always lurked in the back of mymind. When she just heard my history over the phone, Brown,nursing coordinator in Chicago, immediately had suspicions, which is whyshe chose Dr. Strek who is their expert in PF and Autoimmune diseases.Now i know why I never liked science in school. I sensed that it wasn'tdefinitive like math is. I just didn't know it at the time. It's morelike art and I couldn't draw anything if my life depended on it.....lol

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Beth

Yes I do....lol

If I did try the prednisone it would be initially with counseling

scheduled three times a week, until I saw what would happen. I'd take no

chance. And, if (counselor) saw me slipping, then it would be

called off and the doctor told to start the withdrawal program. Now, of

course, the period of withdrawal is the scariest part.

The other conflict on mine that I won't understand until I read the

report in detail is that it seems to have confirmed UIP and yet most

doctors I've talked to do not believe connective tissue disease causes

UIP, like it does NSIP. Now, of course you can have it in addition to.

Lots of questions, but even if it does give me a dilemma, I'm glad to

have the information. I may call Chicago and ask if they can forward a

copy to Duke and get a review by someone there I could talk to while

there. However, I doubt they could get anyone at Duke that quickly.

Well, guess they could as a doctor to doctor favor.

And, then that brings the other issue. Prednisone and Imuran believed to

help NSIP and not believed by most to help UIP. Oh my, will I have a

load of questions for them.

Undifferentiated connective tissue disease was indicated for me too with

two or three forms suggested as possibilities, none of which I'd heard

of. That would also be consistent as Undifferentiated often is

ultimately one of the rarer forms since the most common forms are

generally diagnosable.

>

> Bruce,

> Well you do have a dilemma, don't you? It sounds somewhat familiar in

that Dr. on at Duke believes I have an " undifferentiated

connective tissue disease " . It has not been specifically identified and

likely won't be unless it flares up. I have a few tantalizing symptoms

and some atypical bloodwork also but nothing definitive...yet.

> They have opted not to treat me presently because I am stable. When/if

I begin to deteriorate I am told I will be treated " aggressively " with

prednisone and possibly Immuran depending on what happens when/if things

flare. I don't really have a problem with going on Pred again because I

had a relatively good experience first time around. I did have side

effects but they were managed aggressively, something I would insist on

once again.

> You my friend are in a different situation. Prednisone is a horse of a

different color for you because of your history. Caution is your

watchword and that's as it should be. If it were me Bruce, I would

probably go for another opinion. Since you're going to be in the area,

Duke might be a good idea. I'm very happy with Dr. on. Or maybe

your own doctor might recommend someone at Duke.

> This is no damn fun, you know?

>

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

>

>

>

>

> Confusion - Report from University of

Chicago

>

>

>

> As many know I recently went to the University of Chicago Medical

> Center, one of the 13 Centers of Excellence for IPF. Previously I had

> the opinions of the three local pulmonologists and the pathology

reports

> from the local pathologist and Mayo Clinic in sdale, AZ.

>

> Now the opinion before was straight forward UIP/IPF and no believe

that

> I had an autoimmune disease or connective tissue disease as perhaps

more

> appropriately labelled. However, in the Mayo pathology report there

were

> a couple of items mentioned as atypical. Plus I had some blood tests a

> bit out of range, but that was considered a normal variable. Last, I

had

> also experienced swollen lymph nodes and swallowing and esophagus

> problems.

>

> So I got a return call from the nursing coordinator today and she read

> from the report that is in the mail. Their findings confirm what they

> had as suspicions all along and that is they believe that I do have an

> unidentified connective tissue disease. It may well have just not

> presented itself fully yet. Also, I've heard they can show first and

> then be masked by UIP/IPF. Now, I don't have the report yet so can't

> fully review all the findings and details. After I have reviewed, I

will

> have more discussions with them and they will talk to my local

> pulmonologist.

>

> The significance is that if it is caused by a connective tissue

disease,

> then by treating that disease you can slow down the progression of the

> IPF. Which of course brings us to the treatment, which is prednisone.

> The recommendation is to start with small doses and then to reduce

> further from that. didn't know what small doses meant but

suspect

> its something like 30 mg (maybe 40) reducing to 20 mg as opposed to

the

> 60 mg often used for PF.

>

> So, I'll start working on my long list of questions when I get the

> report. Until then, I'll enjoy San . But looks like I'm going

to

> find myself weighing probabilities and quality vs. quantity of life

> under best and worst cases. I already have a million scenarios and

> questions to cover with the doctor. For instance, if I started with 30

> mg but found within the first 30 days it was affecting my mental

health

> enough to want off, how long would it take to get off, having used it

> less than 30 days. At what point do you cross the line that creates a

> long agonizing period of withdrawal. What are the odds their guess of

> connective tissue is right? What if the prednisone works? What if it

> doesn't and I've just sacrificed quality of life? Since this opinion

is

> different than others, should I now have it verified through another

> opinion from Duke or Emory, either in person or by sending the tests

and

> records and slides to one of them?

>

> My neurologist was concerned several years ago about autoimmune but

> rheumatologist found no indication. It's always lurked in the back of

my

> mind. When she just heard my history over the phone, Brown,

> nursing coordinator in Chicago, immediately had suspicions, which is

why

> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.

>

> Now i know why I never liked science in school. I sensed that it

wasn't

> definitive like math is. I just didn't know it at the time. It's more

> like art and I couldn't draw anything if my life depended on

it.....lol

>

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Bruce,

I am sad to hear your news. This disease really sucks. I hope they find out soon what to do to make you feel better. I agree with Sher - DAMNIT!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: Confusion - Report from University of ChicagoTo: Breathe-Support Date: Thursday, May 1, 2008, 5:58 PM

Well Bruce...today is a big resounding.. .

DAMNIT! no, double DAMNIT! for your latest news. I feel sad.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Confusion - Report from University of Chicago

As many know I recently went to the University of Chicago MedicalCenter, one of the 13 Centers of Excellence for IPF. Previously I hadthe opinions of the three local pulmonologists and the pathology reportsfrom the local pathologist and Mayo Clinic in sdale, AZ.Now the opinion before was straight forward UIP/IPF and no believe thatI had an autoimmune disease or connective tissue disease as perhaps moreappropriately labelled. However, in the Mayo pathology report there werea couple of items mentioned as atypical. Plus I had some blood tests abit out of range, but that was considered a normal variable. Last, I hadalso experienced swollen lymph nodes and swallowing and esophagusproblems.So I got a return call from the nursing coordinator today and she readfrom the report that is in the mail. Their findings confirm what theyhad as suspicions all along and that is they believe that I do

have anunidentified connective tissue disease. It may well have just notpresented itself fully yet. Also, I've heard they can show first andthen be masked by UIP/IPF. Now, I don't have the report yet so can'tfully review all the findings and details. After I have reviewed, I willhave more discussions with them and they will talk to my localpulmonologist.The significance is that if it is caused by a connective tissue disease,then by treating that disease you can slow down the progression of theIPF. Which of course brings us to the treatment, which is prednisone.The recommendation is to start with small doses and then to reducefurther from that. didn't know what small doses meant but suspectits something like 30 mg (maybe 40) reducing to 20 mg as opposed to the60 mg often used for PF.So, I'll start working on my long list of questions when I get thereport. Until then, I'll enjoy San

. But looks like I'm going tofind myself weighing probabilities and quality vs. quantity of lifeunder best and worst cases. I already have a million scenarios andquestions to cover with the doctor. For instance, if I started with 30mg but found within the first 30 days it was affecting my mental healthenough to want off, how long would it take to get off, having used itless than 30 days. At what point do you cross the line that creates along agonizing period of withdrawal. What are the odds their guess ofconnective tissue is right? What if the prednisone works? What if itdoesn't and I've just sacrificed quality of life? Since this opinion isdifferent than others, should I now have it verified through anotheropinion from Duke or Emory, either in person or by sending the tests andrecords and slides to one of them?My neurologist was concerned several years ago about autoimmune

butrheumatologist found no indication. It's always lurked in the back of mymind. When she just heard my history over the phone, Brown,nursing coordinator in Chicago, immediately had suspicions, which is whyshe chose Dr. Strek who is their expert in PF and Autoimmune diseases.Now i know why I never liked science in school. I sensed that it wasn'tdefinitive like math is. I just didn't know it at the time. It's morelike art and I couldn't draw anything if my life depended on it.....lol

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Sher,

Don't you have rheumatoid arthritis? Or am I confused? (That's entirely possible) Pulmonary fibrosis is associated with many auto-immune diseases and RA is one of them.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Confusion - Report from University ofChicago>>>> As many know I recently went to the University of Chicago Medical> Center, one of the 13 Centers of Excellence for IPF. Previously I had> the opinions of the three local pulmonologists and the

pathologyreports> from the local pathologist and Mayo Clinic in sdale, AZ.>> Now the opinion before was straight forward UIP/IPF and no believethat> I had an autoimmune disease or connective tissue disease as perhapsmore> appropriately labelled. However, in the Mayo pathology report therewere> a couple of items mentioned as atypical. Plus I had some blood tests a> bit out of range, but that was considered a normal variable. Last, Ihad> also experienced swollen lymph nodes and swallowing and esophagus> problems.>> So I got a return call from the nursing coordinator today and she read> from the report that is in the mail. Their findings confirm what they> had as suspicions all along and that is they believe that I do have an> unidentified connective tissue disease. It may well have just not> presented itself fully yet. Also,

I've heard they can show first and> then be masked by UIP/IPF. Now, I don't have the report yet so can't> fully review all the findings and details. After I have reviewed, Iwill> have more discussions with them and they will talk to my local> pulmonologist.>> The significance is that if it is caused by a connective tissuedisease,> then by treating that disease you can slow down the progression of the> IPF. Which of course brings us to the treatment, which is prednisone.> The recommendation is to start with small doses and then to reduce> further from that. didn't know what small doses meant butsuspect> its something like 30 mg (maybe 40) reducing to 20 mg as opposed tothe> 60 mg often used for PF.>> So, I'll start working on my long list of questions when I get the> report. Until then, I'll enjoy San . But looks like I'm

goingto> find myself weighing probabilities and quality vs. quantity of life> under best and worst cases. I already have a million scenarios and> questions to cover with the doctor. For instance, if I started with 30> mg but found within the first 30 days it was affecting my mentalhealth> enough to want off, how long would it take to get off, having used it> less than 30 days. At what point do you cross the line that creates a> long agonizing period of withdrawal. What are the odds their guess of> connective tissue is right? What if the prednisone works? What if it> doesn't and I've just sacrificed quality of life? Since this opinionis> different than others, should I now have it verified through another> opinion from Duke or Emory, either in person or by sending the testsand> records and slides to one of them?>> My neurologist was concerned

several years ago about autoimmune but> rheumatologist found no indication. It's always lurked in the back ofmy> mind. When she just heard my history over the phone, Brown,> nursing coordinator in Chicago, immediately had suspicions, which iswhy> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.>> Now i know why I never liked science in school. I sensed that itwasn't> definitive like math is. I just didn't know it at the time. It's more> like art and I couldn't draw anything if my life depended onit.....lol>

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Hey Bruce, I talked to today too. I told her that I was on the message board with you. She said "Oh yes, Bruce". I told her that spoke very highly of her. She told me to tell you "thank you". She wanted to step up the appointment with them. I'm not sure how Don is feeling about it. He is really tired to being poked and prodded. We asked our boys what they thought and the youngest wants to see what another opinion would say. We had a doctor friend of ours here for a couple of days and he seemed to think that we are just confusing ourselves. The oldest is not sure his father needs more and more testing. Now, the doc in Peoria had some kind of indication early on,that Don had something autoimmune going on. I just thought most ipf was autoimmune in nature. It isn't? Geesh! Maybe this is the

opinion we need. K Illinois Sher Bauman wrote: I know, I know, but I can be sad if I want to! Enough is just damn enough! Well, for sure you are a trail blazer Bruce so we will learn more through your research. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Confusion - Report from University ofChicago>>>> As many know I

recently went to the University of Chicago Medical> Center, one of the 13 Centers of Excellence for IPF. Previously I had> the opinions of the three local pulmonologists and the pathologyreports> from the local pathologist and Mayo Clinic in sdale, AZ.>> Now the opinion before was straight forward UIP/IPF and no believethat> I had an autoimmune disease or connective tissue disease as perhapsmore> appropriately labelled. However, in the Mayo pathology report therewere> a couple of items mentioned as atypical. Plus I had some blood tests a> bit out of range, but that was considered a normal variable. Last, Ihad> also experienced swollen lymph nodes and swallowing and esophagus> problems.>> So I got a return call from the nursing coordinator today and she read> from the report that is in the mail. Their findings confirm what they> had as suspicions

all along and that is they believe that I do have an> unidentified connective tissue disease. It may well have just not> presented itself fully yet. Also, I've heard they can show first and> then be masked by UIP/IPF. Now, I don't have the report yet so can't> fully review all the findings and details. After I have reviewed, Iwill> have more discussions with them and they will talk to my local> pulmonologist.>> The significance is that if it is caused by a connective tissuedisease,> then by treating that disease you can slow down the progression of the> IPF. Which of course brings us to the treatment, which is prednisone.> The recommendation is to start with small doses and then to reduce> further from that. didn't know what small doses meant butsuspect> its something like 30 mg (maybe 40) reducing to 20 mg as opposed tothe> 60 mg often used for

PF.>> So, I'll start working on my long list of questions when I get the> report. Until then, I'll enjoy San . But looks like I'm goingto> find myself weighing probabilities and quality vs. quantity of life> under best and worst cases. I already have a million scenarios and> questions to cover with the doctor. For instance, if I started with 30> mg but found within the first 30 days it was affecting my mentalhealth> enough to want off, how long would it take to get off, having used it> less than 30 days. At what point do you cross the line that creates a> long agonizing period of withdrawal. What are the odds their guess of> connective tissue is right? What if the prednisone works? What if it> doesn't and I've just sacrificed quality of life? Since this opinionis> different than others, should I now have it verified through another> opinion from Duke or

Emory, either in person or by sending the testsand> records and slides to one of them?>> My neurologist was concerned several years ago about autoimmune but> rheumatologist found no indication. It's always lurked in the back ofmy> mind. When she just heard my history over the phone, Brown,> nursing coordinator in Chicago, immediately had suspicions, which iswhy> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.>> Now i know why I never liked science in school. I sensed that itwasn't> definitive like math is. I just didn't know it at the time. It's more> like art and I couldn't draw anything if my life depended onit.....lol> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

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MB

Next we'll have autoautoautoimmune....it goes after the ones that go

after the ones that go after your immune system. All of this is about

like the Sun orbiting the Earth. They come up with so many hypothesis

for people who actually know so little sometimes. But, its the best we

have. So we sort through it and make our choices.

> >

> > Bruce,

> > Well you do have a dilemma, don't you? It sounds somewhat familiar

in

> that Dr. on at Duke believes I have an " undifferentiated

> connective tissue disease " . It has not been specifically identified

and

> likely won't be unless it flares up. I have a few tantalizing symptoms

> and some atypical bloodwork also but nothing definitive.. .yet.

> > They have opted not to treat me presently because I am stable.

When/if

> I begin to deteriorate I am told I will be treated " aggressively " with

> prednisone and possibly Immuran depending on what happens when/if

things

> flare. I don't really have a problem with going on Pred again because

I

> had a relatively good experience first time around. I did have side

> effects but they were managed aggressively, something I would insist

on

> once again.

> > You my friend are in a different situation. Prednisone is a horse of

a

> different color for you because of your history. Caution is your

> watchword and that's as it should be. If it were me Bruce, I would

> probably go for another opinion. Since you're going to be in the area,

> Duke might be a good idea. I'm very happy with Dr. on. Or maybe

> your own doctor might recommend someone at Duke.

> > This is no damn fun, you know?

> >

> > Beth

> > Age 48 Fibrotic NSIP 06/06

> >

> > Change everything. Love and Forgive

> >

> >

> >

> >

> >

> > Confusion - Report from University of

> Chicago

> >

> >

> >

> > As many know I recently went to the University of Chicago Medical

> > Center, one of the 13 Centers of Excellence for IPF. Previously I

had

> > the opinions of the three local pulmonologists and the pathology

> reports

> > from the local pathologist and Mayo Clinic in sdale, AZ.

> >

> > Now the opinion before was straight forward UIP/IPF and no believe

> that

> > I had an autoimmune disease or connective tissue disease as perhaps

> more

> > appropriately labelled. However, in the Mayo pathology report there

> were

> > a couple of items mentioned as atypical. Plus I had some blood tests

a

> > bit out of range, but that was considered a normal variable. Last, I

> had

> > also experienced swollen lymph nodes and swallowing and esophagus

> > problems.

> >

> > So I got a return call from the nursing coordinator today and she

read

> > from the report that is in the mail. Their findings confirm what

they

> > had as suspicions all along and that is they believe that I do have

an

> > unidentified connective tissue disease. It may well have just not

> > presented itself fully yet. Also, I've heard they can show first and

> > then be masked by UIP/IPF. Now, I don't have the report yet so can't

> > fully review all the findings and details. After I have reviewed, I

> will

> > have more discussions with them and they will talk to my local

> > pulmonologist.

> >

> > The significance is that if it is caused by a connective tissue

> disease,

> > then by treating that disease you can slow down the progression of

the

> > IPF. Which of course brings us to the treatment, which is

prednisone.

> > The recommendation is to start with small doses and then to reduce

> > further from that. didn't know what small doses meant but

> suspect

> > its something like 30 mg (maybe 40) reducing to 20 mg as opposed to

> the

> > 60 mg often used for PF.

> >

> > So, I'll start working on my long list of questions when I get the

> > report. Until then, I'll enjoy San . But looks like I'm going

> to

> > find myself weighing probabilities and quality vs. quantity of life

> > under best and worst cases. I already have a million scenarios and

> > questions to cover with the doctor. For instance, if I started with

30

> > mg but found within the first 30 days it was affecting my mental

> health

> > enough to want off, how long would it take to get off, having used

it

> > less than 30 days. At what point do you cross the line that creates

a

> > long agonizing period of withdrawal. What are the odds their guess

of

> > connective tissue is right? What if the prednisone works? What if it

> > doesn't and I've just sacrificed quality of life? Since this opinion

> is

> > different than others, should I now have it verified through another

> > opinion from Duke or Emory, either in person or by sending the tests

> and

> > records and slides to one of them?

> >

> > My neurologist was concerned several years ago about autoimmune but

> > rheumatologist found no indication. It's always lurked in the back

of

> my

> > mind. When she just heard my history over the phone, Brown,

> > nursing coordinator in Chicago, immediately had suspicions, which is

> why

> > she chose Dr. Strek who is their expert in PF and Autoimmune

diseases.

> >

> > Now i know why I never liked science in school. I sensed that it

> wasn't

> > definitive like math is. I just didn't know it at the time. It's

more

> > like art and I couldn't draw anything if my life depended on

> it.....lol

> >

>

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MB....no, I do not have RA. My AI testing shows all well. Thanks be to God! I'm not sure I could cope w/much more.

Drs are still trying to figure out what's going on with my heart. Holter monitor...normal....Echo....normal w/traces of stuff. Do have slightly enlarged heart and skipped beats. Heart gets silly at just 6 mw. RT called Cardio w/concern yesterday. He requests now full chem panel. ???? so that's next. I have to be glad though that the monitor/Echo are ok.

How's your trip going?

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Confusion - Report from University ofChicago>>>> As many know I recently went to the University of Chicago Medical> Center, one of the 13 Centers of Excellence for IPF. Previously I had> the opinions of the three local pulmonologists and the pathologyreports> from the local pathologist and Mayo Clinic in sdale, AZ.>> Now the opinion before was straight forward UIP/IPF and no believethat> I had an autoimmune disease or connective tissue disease as perhapsmore> appropriately labelled. However, in the Mayo pathology report therewere> a couple of items mentioned as atypical. Plus I had some blood tests a> bit out of range, but that was considered a normal variable. Last, Ihad> also experienced swollen lymph nodes and swallowing and esophagus> problems.>> So I got a return call from the nursing coordinator today and she read> from the report that is in the mail. Their findings confirm what they> had as suspicions all along and that is they believe that I do have an> unidentified connective tissue disease. It may well have just not> presented itself fully yet. Also, I've heard they can show first and> then be masked by UIP/IPF. Now, I don't have the report yet so can't> fully review all the findings and details. After I have reviewed, Iwill> have more discussions with them and they will talk to my local> pulmonologist.>> The significance is that if it is caused by a connective tissuedisease,> then by treating that disease you can slow down the progression of the> IPF. Which of course brings us to the treatment, which is prednisone.> The recommendation is to start with small doses and then to reduce> further from that. didn't know what small doses meant butsuspect> its something like 30 mg (maybe 40) reducing to 20 mg as opposed tothe> 60 mg often used for PF.>> So, I'll start working on my long list of questions when I get the> report. Until then, I'll enjoy San . But looks like I'm goingto> find myself weighing probabilities and quality vs. quantity of life> under best and worst cases. I already have a million scenarios and> questions to cover with the doctor. For instance, if I started with 30> mg but found within the first 30 days it was affecting my mentalhealth> enough to want off, how long would it take to get off, having used it> less than 30 days. At what point do you cross the line that creates a> long agonizing period of withdrawal. What are the odds their guess of> connective tissue is right? What if the prednisone works? What if it> doesn't and I've just sacrificed quality of life? Since this opinionis> different than others, should I now have it verified through another> opinion from Duke or Emory, either in person or by sending the testsand> records and slides to one of them?>> My neurologist was concerned several years ago about autoimmune but> rheumatologist found no indication. It's always lurked in the back ofmy> mind. When she just heard my history over the phone, Brown,> nursing coordinator in Chicago, immediately had suspicions, which iswhy> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.>> Now i know why I never liked science in school. I sensed that itwasn't> definitive like math is. I just didn't know it at the time. It's more> like art and I couldn't draw anything if my life depended onit.....lol>

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Sher,

See that's my faulty memory! I'm glad, cause enough is definitely enough. My Dad used to say he had CRS, which stood for Can't Remember Sh_ _!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Confusion - Report from University ofChicago>>>> As many know I recently went to the University of Chicago Medical> Center, one of the 13 Centers of Excellence for IPF. Previously I had> the opinions of the three local pulmonologists and the

pathologyreports> from the local pathologist and Mayo Clinic in sdale, AZ.>> Now the opinion before was straight forward UIP/IPF and no believethat> I had an autoimmune disease or connective tissue disease as perhapsmore> appropriately labelled. However, in the Mayo pathology report therewere> a couple of items mentioned as atypical. Plus I had some blood tests a> bit out of range, but that was considered a normal variable. Last, Ihad> also experienced swollen lymph nodes and swallowing and esophagus> problems.>> So I got a return call from the nursing coordinator today and she read> from the report that is in the mail. Their findings confirm what they> had as suspicions all along and that is they believe that I do have an> unidentified connective tissue disease. It may well have just not> presented itself fully yet. Also,

I've heard they can show first and> then be masked by UIP/IPF. Now, I don't have the report yet so can't> fully review all the findings and details. After I have reviewed, Iwill> have more discussions with them and they will talk to my local> pulmonologist.>> The significance is that if it is caused by a connective tissuedisease,> then by treating that disease you can slow down the progression of the> IPF. Which of course brings us to the treatment, which is prednisone.> The recommendation is to start with small doses and then to reduce> further from that. didn't know what small doses meant butsuspect> its something like 30 mg (maybe 40) reducing to 20 mg as opposed tothe> 60 mg often used for PF.>> So, I'll start working on my long list of questions when I get the> report. Until then, I'll enjoy San . But looks like I'm

goingto> find myself weighing probabilities and quality vs. quantity of life> under best and worst cases. I already have a million scenarios and> questions to cover with the doctor. For instance, if I started with 30> mg but found within the first 30 days it was affecting my mentalhealth> enough to want off, how long would it take to get off, having used it> less than 30 days. At what point do you cross the line that creates a> long agonizing period of withdrawal. What are the odds their guess of> connective tissue is right? What if the prednisone works? What if it> doesn't and I've just sacrificed quality of life? Since this opinionis> different than others, should I now have it verified through another> opinion from Duke or Emory, either in person or by sending the testsand> records and slides to one of them?>> My neurologist was concerned

several years ago about autoimmune but> rheumatologist found no indication. It's always lurked in the back ofmy> mind. When she just heard my history over the phone, Brown,> nursing coordinator in Chicago, immediately had suspicions, which iswhy> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.>> Now i know why I never liked science in school. I sensed that itwasn't> definitive like math is. I just didn't know it at the time. It's more> like art and I couldn't draw anything if my life depended onit.....lol>

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MB...yes, I have now put CRS at the top of my list!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Confusion - Report from University ofChicago>>>> As many know I recently went to the University of Chicago Medical> Center, one of the 13 Centers of Excellence for IPF. Previously I had> the opinions of the three local pulmonologists and the pathologyreports> from the local pathologist and Mayo Clinic in sdale, AZ.>> Now the opinion before was straight forward UIP/IPF and no believethat> I had an autoimmune disease or connective tissue disease as perhapsmore> appropriately labelled. However, in the Mayo pathology report therewere> a couple of items mentioned as atypical. Plus I had some blood tests a> bit out of range, but that was considered a normal variable. Last, Ihad> also experienced swollen lymph nodes and swallowing and esophagus> problems.>> So I got a return call from the nursing coordinator today and she read> from the report that is in the mail. Their findings confirm what they> had as suspicions all along and that is they believe that I do have an> unidentified connective tissue disease. It may well have just not> presented itself fully yet. Also, I've heard they can show first and> then be masked by UIP/IPF. Now, I don't have the report yet so can't> fully review all the findings and details. After I have reviewed, Iwill> have more discussions with them and they will talk to my local> pulmonologist.>> The significance is that if it is caused by a connective tissuedisease,> then by treating that disease you can slow down the progression of the> IPF. Which of course brings us to the treatment, which is prednisone.> The recommendation is to start with small doses and then to reduce> further from that. didn't know what small doses meant butsuspect> its something like 30 mg (maybe 40) reducing to 20 mg as opposed tothe> 60 mg often used for PF.>> So, I'll start working on my long list of questions when I get the> report. Until then, I'll enjoy San . But looks like I'm goingto> find myself weighing probabilities and quality vs. quantity of life> under best and worst cases. I already have a million scenarios and> questions to cover with the doctor. For instance, if I started with 30> mg but found within the first 30 days it was affecting my mentalhealth> enough to want off, how long would it take to get off, having used it> less than 30 days. At what point do you cross the line that creates a> long agonizing period of withdrawal. What are the odds their guess of> connective tissue is right? What if the prednisone works? What if it> doesn't and I've just sacrificed quality of life? Since this opinionis> different than others, should I now have it verified through another> opinion from Duke or Emory, either in person or by sending the testsand> records and slides to one of them?>> My neurologist was concerned several years ago about autoimmune but> rheumatologist found no indication. It's always lurked in the back ofmy> mind. When she just heard my history over the phone, Brown,> nursing coordinator in Chicago, immediately had suspicions, which iswhy> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.>> Now i know why I never liked science in school. I sensed that itwasn't> definitive like math is. I just didn't know it at the time. It's more> like art and I couldn't draw anything if my life depended onit.....lol>

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Hi Bruce, Sometimes being new make one hesitant to speak out, for we feel we know so little. I've often been confused on this site, not understanding what the deal was with prednisone. They had me on high doses in the Hospital along with AdVair. Then abruptly lowered it from 40mg to 10mg. I complained about the weight gain, so a month ago they took me off AdVair and dropped the pred down to 2.5mg and said if there was no difference, I could get off it entirely! Well this week I just stoped and I have never felt any side affects from the very begining. I only hope this will stop the weight gain.. Is there something I'm just not aware of when you stop taking it? I feel really dumb, but I had to ask. I feel fine, or at least as fine as one can be on 02! Thanks my friend,TerryBruce Moreland wrote: As many know I recently went to the University of Chicago MedicalCenter, one of the 13 Centers of Excellence for IPF. Previously I hadthe opinions of the three local pulmonologists and the pathology reportsfrom the local pathologist and Mayo Clinic in sdale, AZ.Now the opinion before was straight forward UIP/IPF and no believe thatI had an autoimmune disease or connective tissue disease as perhaps moreappropriately labelled. However, in the Mayo pathology report there werea couple of items mentioned as atypical. Plus I had some blood

tests abit out of range, but that was considered a normal variable. Last, I hadalso experienced swollen lymph nodes and swallowing and esophagusproblems.So I got a return call from the nursing coordinator today and she readfrom the report that is in the mail. Their findings confirm what theyhad as suspicions all along and that is they believe that I do have anunidentified connective tissue disease. It may well have just notpresented itself fully yet. Also, I've heard they can show first andthen be masked by UIP/IPF. Now, I don't have the report yet so can'tfully review all the findings and details. After I have reviewed, I willhave more discussions with them and they will talk to my localpulmonologist.The significance is that if it is caused by a connective tissue disease,then by treating that disease you can slow down the progression of theIPF. Which of course brings us to the treatment, which is

prednisone.The recommendation is to start with small doses and then to reducefurther from that. didn't know what small doses meant but suspectits something like 30 mg (maybe 40) reducing to 20 mg as opposed to the60 mg often used for PF.So, I'll start working on my long list of questions when I get thereport. Until then, I'll enjoy San . But looks like I'm going tofind myself weighing probabilities and quality vs. quantity of lifeunder best and worst cases. I already have a million scenarios andquestions to cover with the doctor. For instance, if I started with 30mg but found within the first 30 days it was affecting my mental healthenough to want off, how long would it take to get off, having used itless than 30 days. At what point do you cross the line that creates along agonizing period of withdrawal. What are the odds their guess ofconnective tissue is right? What if the prednisone works? What if

itdoesn't and I've just sacrificed quality of life? Since this opinion isdifferent than others, should I now have it verified through anotheropinion from Duke or Emory, either in person or by sending the tests andrecords and slides to one of them?My neurologist was concerned several years ago about autoimmune butrheumatologist found no indication. It's always lurked in the back of mymind. When she just heard my history over the phone, Brown,nursing coordinator in Chicago, immediately had suspicions, which is whyshe chose Dr. Strek who is their expert in PF and Autoimmune diseases.Now i know why I never liked science in school. I sensed that it wasn'tdefinitive like math is. I just didn't know it at the time. It's morelike art and I couldn't draw anything if my life depended on it.....lolTerry Pennisi 11/07 IPF Nevada

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Terry

Yes, there is much more typically to being on it and getting off it. Of

course it depends on (1) how your body and system react, (2) the dosage

you are on and (3) how long you are on. However, for those on high

dosages for an extended period it can take up to a year to get off. You

can experience pain and nervous system reactions to the steps down and

they may have to be done very slowly. Incidentally, I have been on other

medications that required long periods to withdraw. I was on doxepin for

sleep for 8 years as it was once commonly prescribed but now would never

be prescribed for sleep with more modern meds available. I was on 50 mg

which wasn't an extreme dosage and first tried to go down 10 mg per week

and had an awful reaction, so had to go back up. Then i came down 10 mg

per month and in total it took six months.

Now when you're on short periods of prednisone like one often gets

prescribed there is generally no problem. But there are many here who

were on as much as 60 mg and many who were on 40 mg for a year or more

and have had very tough times coming down. That is also compounded if

the problem is mood or mental in that (just like many psychiatric meds)

if its causing you distress after a long period of use you have to go

through even more as you can't just stop or even stop quickly as that

would cause many times more emotional and mental trauma.

>

> As many know I recently went to the University of Chicago Medical

> Center, one of the 13 Centers of Excellence for IPF. Previously I had

> the opinions of the three local pulmonologists and the pathology

reports

> from the local pathologist and Mayo Clinic in sdale, AZ.

>

> Now the opinion before was straight forward UIP/IPF and no believe

that

> I had an autoimmune disease or connective tissue disease as perhaps

more

> appropriately labelled. However, in the Mayo pathology report there

were

> a couple of items mentioned as atypical. Plus I had some blood tests a

> bit out of range, but that was considered a normal variable. Last, I

had

> also experienced swollen lymph nodes and swallowing and esophagus

> problems.

>

> So I got a return call from the nursing coordinator today and she read

> from the report that is in the mail. Their findings confirm what they

> had as suspicions all along and that is they believe that I do have an

> unidentified connective tissue disease. It may well have just not

> presented itself fully yet. Also, I've heard they can show first and

> then be masked by UIP/IPF. Now, I don't have the report yet so can't

> fully review all the findings and details. After I have reviewed, I

will

> have more discussions with them and they will talk to my local

> pulmonologist.

>

> The significance is that if it is caused by a connective tissue

disease,

> then by treating that disease you can slow down the progression of the

> IPF. Which of course brings us to the treatment, which is prednisone.

> The recommendation is to start with small doses and then to reduce

> further from that. didn't know what small doses meant but

suspect

> its something like 30 mg (maybe 40) reducing to 20 mg as opposed to

the

> 60 mg often used for PF.

>

> So, I'll start working on my long list of questions when I get the

> report. Until then, I'll enjoy San . But looks like I'm going

to

> find myself weighing probabilities and quality vs. quantity of life

> under best and worst cases. I already have a million scenarios and

> questions to cover with the doctor. For instance, if I started with 30

> mg but found within the first 30 days it was affecting my mental

health

> enough to want off, how long would it take to get off, having used it

> less than 30 days. At what point do you cross the line that creates a

> long agonizing period of withdrawal. What are the odds their guess of

> connective tissue is right? What if the prednisone works? What if it

> doesn't and I've just sacrificed quality of life? Since this opinion

is

> different than others, should I now have it verified through another

> opinion from Duke or Emory, either in person or by sending the tests

and

> records and slides to one of them?

>

> My neurologist was concerned several years ago about autoimmune but

> rheumatologist found no indication. It's always lurked in the back of

my

> mind. When she just heard my history over the phone, Brown,

> nursing coordinator in Chicago, immediately had suspicions, which is

why

> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.

>

> Now i know why I never liked science in school. I sensed that it

wasn't

> definitive like math is. I just didn't know it at the time. It's more

> like art and I couldn't draw anything if my life depended on

it.....lol

>

>

>

>

>

>

> Terry Pennisi 11/07 IPF Nevada

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try

it now.

>

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Thank you Bruce, it gets confusing at times. I sometimes get head aches and wonder, is this just normal. Oh well, I guess It will take time. I feel as if I started out at the end, since I've been on 02 from day one! From what I've read, this is end stage. I'm not scared, just confused!!!! Thanks again. You have become a guiding light! TerBruce Moreland wrote: TerryYes, there is much more typically to being on it and getting off it. Ofcourse it depends on (1) how

your body and system react, (2) the dosageyou are on and (3) how long you are on. However, for those on highdosages for an extended period it can take up to a year to get off. Youcan experience pain and nervous system reactions to the steps down andthey may have to be done very slowly. Incidentally, I have been on othermedications that required long periods to withdraw. I was on doxepin forsleep for 8 years as it was once commonly prescribed but now would neverbe prescribed for sleep with more modern meds available. I was on 50 mgwhich wasn't an extreme dosage and first tried to go down 10 mg per weekand had an awful reaction, so had to go back up. Then i came down 10 mgper month and in total it took six months.Now when you're on short periods of prednisone like one often getsprescribed there is generally no problem. But there are many here whowere on as much as 60 mg and many who were on 40 mg for a year or

moreand have had very tough times coming down. That is also compounded ifthe problem is mood or mental in that (just like many psychiatric meds)if its causing you distress after a long period of use you have to gothrough even more as you can't just stop or even stop quickly as thatwould cause many times more emotional and mental trauma.>> As many know I recently went to the University of Chicago Medical> Center, one of the 13 Centers of Excellence for IPF. Previously I had> the opinions of the three local pulmonologists and the pathologyreports> from the local pathologist and Mayo Clinic in sdale, AZ.>> Now the opinion before was straight forward UIP/IPF and no believethat> I had an autoimmune disease or connective tissue disease as perhapsmore>

appropriately labelled. However, in the Mayo pathology report therewere> a couple of items mentioned as atypical. Plus I had some blood tests a> bit out of range, but that was considered a normal variable. Last, Ihad> also experienced swollen lymph nodes and swallowing and esophagus> problems.>> So I got a return call from the nursing coordinator today and she read> from the report that is in the mail. Their findings confirm what they> had as suspicions all along and that is they believe that I do have an> unidentified connective tissue disease. It may well have just not> presented itself fully yet. Also, I've heard they can show first and> then be masked by UIP/IPF. Now, I don't have the report yet so can't> fully review all the findings and details. After I have reviewed, Iwill> have more discussions with them and they will talk to my local>

pulmonologist.>> The significance is that if it is caused by a connective tissuedisease,> then by treating that disease you can slow down the progression of the> IPF. Which of course brings us to the treatment, which is prednisone.> The recommendation is to start with small doses and then to reduce> further from that. didn't know what small doses meant butsuspect> its something like 30 mg (maybe 40) reducing to 20 mg as opposed tothe> 60 mg often used for PF.>> So, I'll start working on my long list of questions when I get the> report. Until then, I'll enjoy San . But looks like I'm goingto> find myself weighing probabilities and quality vs. quantity of life> under best and worst cases. I already have a million scenarios and> questions to cover with the doctor. For instance, if I started with 30> mg but found within the first 30 days it was

affecting my mentalhealth> enough to want off, how long would it take to get off, having used it> less than 30 days. At what point do you cross the line that creates a> long agonizing period of withdrawal. What are the odds their guess of> connective tissue is right? What if the prednisone works? What if it> doesn't and I've just sacrificed quality of life? Since this opinionis> different than others, should I now have it verified through another> opinion from Duke or Emory, either in person or by sending the testsand> records and slides to one of them?>> My neurologist was concerned several years ago about autoimmune but> rheumatologist found no indication. It's always lurked in the back ofmy> mind. When she just heard my history over the phone, Brown,> nursing coordinator in Chicago, immediately had suspicions, which iswhy> she chose Dr. Strek who

is their expert in PF and Autoimmune diseases.>> Now i know why I never liked science in school. I sensed that itwasn't> definitive like math is. I just didn't know it at the time. It's more> like art and I couldn't draw anything if my life depended onit.....lol>>>>>>> Terry Pennisi 11/07 IPF Nevada>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>Terry Pennisi 11/07 IPF Nevada

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