new to group

[Guest guest]

Hi, Bonnie. Welcome to the group. Before I forget to tell you, there are

some great links, if you scroll down past the bottom of your original

message. You said you had sarc in the lymph nodes & lungs; did you have

any biopsies? Have you been treated with Prednisone or any other drugs?

How long have you had the dizziness, double vision, coordination problems,

etc? The tricky thing about neurosarc is that it can present in so many

different ways. I was diagnosed with sarc by a biopsy of lymph nodes in my

chest in 1994. My lungs were clear & I had no symptoms, so everybody

pretty well forgot about it. 5 years later, I had sudden hearing loss in

the right ear, then 5 months later a left Bell's palsy, then hearing loss

in the left ear a month after that. We know now that this was all a result

of cranial nerve involvement by the sarc, but at the time, it was all

chalked up to viruses. Then a year later I started having weird systemic

symptoms: feeling like cobwebs on my face, severe fatigue & muscle

weakness, weight loss, balance problems, tremors, another Bell's palsy, leg

pain & electric shock sensations, vertigo, trigeminal neuralgia, &

eventually numbness & burning pain in my feet. Most of these symptoms were

again blamed on a virus by my PCP. I finally saw a neurologist in spring

2001, who thought it was NS. But even with this history, plus a lung

biopsy positive for sarc, he was reluctant to treat because the spinal tap,

MRI, labs, etc. were normal. (I recently saw a sarc specialist at the

Univ. of Cincinnati who said my spinal tap was not normal). I didn't get

treated for another year, after I paid out-of-pocket to see a specialist in

Atlanta. So they basically have to rule out any other cause of your

symptoms, & if you have a biopsy of anything (nodes, lung, skin) positive

for sarc, it's more likely someone will make the call of neurosarc. It can

be exceedingly frustrating; others will share their stories & give you

additional info. That's why it's so important to get all the info you can.

Most doctors, even most neurologists, are not up to date on NS. Hope this

gives you a start & didn't overwhelm you. Again, welcome. Rose, moderator

Original Message:

-----------------

From: Bonnie Pearson quiltenbe@...

Date: Tue, 21 Jun 2005 02:09:10 -0000

To: Neurosarcoidosis

Subject: new to group

Hi,

I am new here and not even sure if this is what I have. I need info.

I've been diagnosed with sarcoidosis for 4 or 5 years now. Started in

one eye then the lymph nodes and lung thing. Then problem with muscles

and joints. Excercise became impossible,living day to day, as I'm sure

you all know. anyway, i started with double vision and dizziness that

my primaary thinks is neurologic in nature and I'm going to a neuro in

a couple of weeks. Anybody else have this as a presenting problem??

Also I'm having problems with coordination and walking/driving.

I had some neuro workups when I was early in my diagnosis butr my

sarcoid was never diagnosed with a biopsy so there's always been a

question if it truly is sarc. Now, I'm concerned. Any feed back will be

most appreciated.

Thanks,

] Bonnie

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thanks all for your warm welcome. My sarcoid was diagnosed by cat scan and blood work and sypmtoms. A pulmonary Dr. diagnosed me but did not do a biopsy. Since I had never heard of this illness before, I didn't know enough to ask for one. H e felt comfortable with his diagnosis. Everyone since then, my primary, my rheumo dr have all questioned this diagnosis. I was treated with prednisone for 5 months and then taken off it. I had major muscle problem within 6 months of diagnosis. I was tested for many things, including ms and myasthenia gravis. All came back fine.I began having problems chewing food, walking etc. It cleard up over time but comes back when I'm tired. Now I have dizziness, double vision an problems with coordination. My primary, who is wonderful by the way, thinks my cerebular area is involved with this and is sending me for an eval. Driving is getting scary but I have to work!! Yikes.

Bonnie Re: new to group

Dear Bonnie:

Welcome to the group. I am glad that you have found us, though sorry that you are ill and needing seek our help. I am also happy that you have felt comfortable to post and ask your questions, please continue to do so, there are many experienced members here and though things are quiet sometimes, if you give it time, your questions will always get answered. The group is a great place to come for support or just to vent as well.

My name is Kim, it is getting very late now, so I am going to address your specific questions in the morning, but I wanted to welcome you now before signing out of here tonight. I will say quickly that I am sure many have had trouble with dizziness and vision problems are also common. Coordination and walking problems are also common.

Please write and tell us how your sarcoid was diagnosed. I am sure many will share their experiences with you.

Take care,

Kim

NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thanks all for your warm welcome. My sarcoid was diagnosed by cat scan and blood work and sypmtoms. A pulmonary Dr. diagnosed me but did not do a biopsy. Since I had never heard of this illness before, I didn't know enough to ask for one. H e felt comfortable with his diagnosis. Everyone since then, my primary, my rheumo dr have all questioned this diagnosis. I was treated with prednisone for 5 months and then taken off it. I had major muscle problem within 6 months of diagnosis. I was tested for many things, including ms and myasthenia gravis. All came back fine.I began having problems chewing food, walking etc. It cleard up over time but comes back when I'm tired. Now I have dizziness, double vision an problems with coordination. My primary, who is wonderful by the way, thinks my cerebular area is involved with this and is sending me for an eval. Driving is getting scary but I have to work!! Yikes.

Bonnie Re: new to group

Dear Bonnie:

Welcome to the group. I am glad that you have found us, though sorry that you are ill and needing seek our help. I am also happy that you have felt comfortable to post and ask your questions, please continue to do so, there are many experienced members here and though things are quiet sometimes, if you give it time, your questions will always get answered. The group is a great place to come for support or just to vent as well.

My name is Kim, it is getting very late now, so I am going to address your specific questions in the morning, but I wanted to welcome you now before signing out of here tonight. I will say quickly that I am sure many have had trouble with dizziness and vision problems are also common. Coordination and walking problems are also common.

Please write and tell us how your sarcoid was diagnosed. I am sure many will share their experiences with you.

Take care,

Kim

NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thanks all for your warm welcome. My sarcoid was diagnosed by cat scan and blood work and sypmtoms. A pulmonary Dr. diagnosed me but did not do a biopsy. Since I had never heard of this illness before, I didn't know enough to ask for one. H e felt comfortable with his diagnosis. Everyone since then, my primary, my rheumo dr have all questioned this diagnosis. I was treated with prednisone for 5 months and then taken off it. I had major muscle problem within 6 months of diagnosis. I was tested for many things, including ms and myasthenia gravis. All came back fine.I began having problems chewing food, walking etc. It cleard up over time but comes back when I'm tired. Now I have dizziness, double vision an problems with coordination. My primary, who is wonderful by the way, thinks my cerebular area is involved with this and is sending me for an eval. Driving is getting scary but I have to work!! Yikes.

Bonnie Re: new to group

Dear Bonnie:

Welcome to the group. I am glad that you have found us, though sorry that you are ill and needing seek our help. I am also happy that you have felt comfortable to post and ask your questions, please continue to do so, there are many experienced members here and though things are quiet sometimes, if you give it time, your questions will always get answered. The group is a great place to come for support or just to vent as well.

My name is Kim, it is getting very late now, so I am going to address your specific questions in the morning, but I wanted to welcome you now before signing out of here tonight. I will say quickly that I am sure many have had trouble with dizziness and vision problems are also common. Coordination and walking problems are also common.

Please write and tell us how your sarcoid was diagnosed. I am sure many will share their experiences with you.

Take care,

Kim

NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Dawn,

Hi! I'm sorry you're having such a rough time. I'm not sure what kind of information you're looking for, but I just wanted to say keep advocating for yourself. I'm also a female (in my 30s) with no IBD diagnosis (at least not yet!) and I had to wait a long time for my PSC diagnosis and was told that I didn't fit the traditional outlook as well, but thanks to persistence and some good doctors I got my diagnosis and am getting help. I'm a VA girl and, you're right, it is hard to find specialists around VA and MD who have much familiarity or any knowledge of PSC, but don't give up! I don't know where you live, but if you're in VA and would like the names of the doctors I see here, I'd be more than happy to share.

Good luck!

Sandi in VA._,___

[Guest guest]

Dawn,

Hi! I'm sorry you're having such a rough time. I'm not sure what kind of information you're looking for, but I just wanted to say keep advocating for yourself. I'm also a female (in my 30s) with no IBD diagnosis (at least not yet!) and I had to wait a long time for my PSC diagnosis and was told that I didn't fit the traditional outlook as well, but thanks to persistence and some good doctors I got my diagnosis and am getting help. I'm a VA girl and, you're right, it is hard to find specialists around VA and MD who have much familiarity or any knowledge of PSC, but don't give up! I don't know where you live, but if you're in VA and would like the names of the doctors I see here, I'd be more than happy to share.

Good luck!

Sandi in VA._,___

[Guest guest]

Dawn,

Hi! I'm sorry you're having such a rough time. I'm not sure what kind of information you're looking for, but I just wanted to say keep advocating for yourself. I'm also a female (in my 30s) with no IBD diagnosis (at least not yet!) and I had to wait a long time for my PSC diagnosis and was told that I didn't fit the traditional outlook as well, but thanks to persistence and some good doctors I got my diagnosis and am getting help. I'm a VA girl and, you're right, it is hard to find specialists around VA and MD who have much familiarity or any knowledge of PSC, but don't give up! I don't know where you live, but if you're in VA and would like the names of the doctors I see here, I'd be more than happy to share.

Good luck!

Sandi in VA._,___

[Guest guest]

Thank you Sandi.

I am not far from some parts of VA, I live just south of Baltimore and

am willing to drive, if it's not to far as I have trouble staying

awake when driving any distance. It just feels good to know that

there are others out there with this. I am reading and just trying to

figure out how feel as good as possible each day. That's my biggest

concern, I do not know how to maximize my energy and health.

Dawn

[Guest guest]

Thank you Sandi.

I am not far from some parts of VA, I live just south of Baltimore and

am willing to drive, if it's not to far as I have trouble staying

awake when driving any distance. It just feels good to know that

there are others out there with this. I am reading and just trying to

figure out how feel as good as possible each day. That's my biggest

concern, I do not know how to maximize my energy and health.

Dawn

[Guest guest]

Thank you Sandi.

I am not far from some parts of VA, I live just south of Baltimore and

am willing to drive, if it's not to far as I have trouble staying

awake when driving any distance. It just feels good to know that

there are others out there with this. I am reading and just trying to

figure out how feel as good as possible each day. That's my biggest

concern, I do not know how to maximize my energy and health.

Dawn

[Guest guest]

Dawn,Small duct PSC is a lot harder to diagnose. It took about 6 years for me to get a diagnosis, even though the 2000 colectomy surgery showed a cirrhotic liver. Apparently with the small duct PSC the liver goes bad from the outside to the inside so that the large bile duct is affected last. You may want to go to the Mayo Clinic for evaluation, as they seem to be the best, especially with unusual symptoms or an unusual presentation. There are 3 Mayo Clinics: Rochester, MN; ville, FL, and another in Arizona. I'd go to Rochester or ville.Marie

To: From: mdwblaze@...Date: Fri, 1 Aug 2008 12:17:26 +0000Subject: New to group

I wanted to say hi and introduce myself. I am Dawn, a 39(40 in 2

weeks) year old female with small duct PSC. I was diagnosed in 2003;

however, I have had my symptoms in 1994. My latest biopsy showed

Obliteration of my small ducts and large duct inflammation. I am

always tired, and at itch really bad. The pain that comes in my

upper right quadrant is severe and last for an hour or so at times.

I have had a fit with the physicians in my area, some say I have PSC

others say I don't even though both biopsy have stated that I do.

The confusion seems to be that I am a female and I do not have

irritable bowel disease. My primary care doctor, who is wonderful,

tells me that all of my manifestations are unusual and that the Dr's

at s Hopkins and University of land are not used to seeing

some one present the way I have. He has found a specialist for me to

see; however, I can't get in till the end of October, though I call

every week to see if there has been a cancellation. I have multiple

vitamin def and have developed hypoglycemia and Tachycardia. It is

getting hard to continue working full time. Any information you all

could provide would be greatly appreciated or any links to

information. Thank you all for being here.

DAwn

Get more from your digital life. Find out how.

[Guest guest]

Dawn,Small duct PSC is a lot harder to diagnose. It took about 6 years for me to get a diagnosis, even though the 2000 colectomy surgery showed a cirrhotic liver. Apparently with the small duct PSC the liver goes bad from the outside to the inside so that the large bile duct is affected last. You may want to go to the Mayo Clinic for evaluation, as they seem to be the best, especially with unusual symptoms or an unusual presentation. There are 3 Mayo Clinics: Rochester, MN; ville, FL, and another in Arizona. I'd go to Rochester or ville.Marie

To: From: mdwblaze@...Date: Fri, 1 Aug 2008 12:17:26 +0000Subject: New to group

I wanted to say hi and introduce myself. I am Dawn, a 39(40 in 2

weeks) year old female with small duct PSC. I was diagnosed in 2003;

however, I have had my symptoms in 1994. My latest biopsy showed

Obliteration of my small ducts and large duct inflammation. I am

always tired, and at itch really bad. The pain that comes in my

upper right quadrant is severe and last for an hour or so at times.

I have had a fit with the physicians in my area, some say I have PSC

others say I don't even though both biopsy have stated that I do.

The confusion seems to be that I am a female and I do not have

irritable bowel disease. My primary care doctor, who is wonderful,

tells me that all of my manifestations are unusual and that the Dr's

at s Hopkins and University of land are not used to seeing

some one present the way I have. He has found a specialist for me to

see; however, I can't get in till the end of October, though I call

every week to see if there has been a cancellation. I have multiple

vitamin def and have developed hypoglycemia and Tachycardia. It is

getting hard to continue working full time. Any information you all

could provide would be greatly appreciated or any links to

information. Thank you all for being here.

DAwn

Get more from your digital life. Find out how.

[Guest guest]

Dawn,Small duct PSC is a lot harder to diagnose. It took about 6 years for me to get a diagnosis, even though the 2000 colectomy surgery showed a cirrhotic liver. Apparently with the small duct PSC the liver goes bad from the outside to the inside so that the large bile duct is affected last. You may want to go to the Mayo Clinic for evaluation, as they seem to be the best, especially with unusual symptoms or an unusual presentation. There are 3 Mayo Clinics: Rochester, MN; ville, FL, and another in Arizona. I'd go to Rochester or ville.Marie

To: From: mdwblaze@...Date: Fri, 1 Aug 2008 12:17:26 +0000Subject: New to group

I wanted to say hi and introduce myself. I am Dawn, a 39(40 in 2

weeks) year old female with small duct PSC. I was diagnosed in 2003;

however, I have had my symptoms in 1994. My latest biopsy showed

Obliteration of my small ducts and large duct inflammation. I am

always tired, and at itch really bad. The pain that comes in my

upper right quadrant is severe and last for an hour or so at times.

I have had a fit with the physicians in my area, some say I have PSC

others say I don't even though both biopsy have stated that I do.

The confusion seems to be that I am a female and I do not have

irritable bowel disease. My primary care doctor, who is wonderful,

tells me that all of my manifestations are unusual and that the Dr's

at s Hopkins and University of land are not used to seeing

some one present the way I have. He has found a specialist for me to

see; however, I can't get in till the end of October, though I call

every week to see if there has been a cancellation. I have multiple

vitamin def and have developed hypoglycemia and Tachycardia. It is

getting hard to continue working full time. Any information you all

could provide would be greatly appreciated or any links to

information. Thank you all for being here.

DAwn

Get more from your digital life. Find out how.

[Guest guest]

Thanks, I have considered Mayo at ville

[Guest guest]

Thanks, I have considered Mayo at ville

[Guest guest]

Thanks, I have considered Mayo at ville

[Guest guest]

Hi and welcome! I'm glad that you found us though I am sorry you had reason to look for us in the first place. I am also sorry that you have to cope with all this at your age with a young family.

It would seem to me that your first order of business should be to get yourself an accurate diagnosis. What tests has your pulmonologist done? A high resolution ct scan? a 6 minute walk? What are your oxygen saturations? Has your cardiologist done a stress test? Have they talked about the possibility of lung biopsy?

It's really impossible to speculate on what your process and progression might be when it doesn't sound as though they've given you a nailed down diagnosis. There are over 200 different types of interstitial lung disease that can cause pulmonary fibrosis. There are a few that are more common than others and two that really tend to stand out as the most common. Those are UIP (usual interstitial pneumonia) and NSIP (non-specific interstitial pneumonitis).

You really need more information about what is going on with your body? Are you in the US? If you are I would suggest getting yourself to the closest university medical center that has a pulmonology dept that deals with ILD. I live in Durham, NC and I go to Duke University Medical Center. It's at places like that where it can be easier to get a more solid diagnosis. Then you will have more information and a basis on which to proceed.

Unfortunately treatment options are limited for most pulmonary fibrosis. There is no way to reverse scarring once it occurs. Depending on the type progression can sometimes be slowed or stopped and down the road there is the possibility of lung transplant should you choose it and qualify.

I know that you feel really overwhelmed right now. We understand. You've reached a group of people who "get it". We have walked in your shoes, some of us for many years. Try not to panic. There is no expiration date tatooed on your body. Concentrate on gathering information and looking after yourself. Eat well, get alot of rest and insist the doctors do what it takes to get you some answers.

We're here anytime you need us!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Monday, December 8, 2008 4:17:50 PMSubject: new to group

Hello everyone my Name is I was just Diagnosed with pulmonary Fiborosis .And I am only thrity six years old.I have been suffering with Chronic Sinus for years and short of breath my pulse rate was 150 with exercise and lying down so the cardligest put me on cardizem for my heart rate which .is still high and lightheaded and headache and eye troble plus dizzyness and hard time doing activites. my lungs feel very short of breath my Pulmogligest. says it is only the begining of int.fibrosios. I am very upset.I am a Mother of 4 Boy's and wife.this has been a long process. I wonder if any one can get me some answers to what is the process.thanks DENISE

[Guest guest]

Hi and welcome! I'm glad that you found us though I am sorry you had reason to look for us in the first place. I am also sorry that you have to cope with all this at your age with a young family.

It would seem to me that your first order of business should be to get yourself an accurate diagnosis. What tests has your pulmonologist done? A high resolution ct scan? a 6 minute walk? What are your oxygen saturations? Has your cardiologist done a stress test? Have they talked about the possibility of lung biopsy?

It's really impossible to speculate on what your process and progression might be when it doesn't sound as though they've given you a nailed down diagnosis. There are over 200 different types of interstitial lung disease that can cause pulmonary fibrosis. There are a few that are more common than others and two that really tend to stand out as the most common. Those are UIP (usual interstitial pneumonia) and NSIP (non-specific interstitial pneumonitis).

You really need more information about what is going on with your body? Are you in the US? If you are I would suggest getting yourself to the closest university medical center that has a pulmonology dept that deals with ILD. I live in Durham, NC and I go to Duke University Medical Center. It's at places like that where it can be easier to get a more solid diagnosis. Then you will have more information and a basis on which to proceed.

Unfortunately treatment options are limited for most pulmonary fibrosis. There is no way to reverse scarring once it occurs. Depending on the type progression can sometimes be slowed or stopped and down the road there is the possibility of lung transplant should you choose it and qualify.

I know that you feel really overwhelmed right now. We understand. You've reached a group of people who "get it". We have walked in your shoes, some of us for many years. Try not to panic. There is no expiration date tatooed on your body. Concentrate on gathering information and looking after yourself. Eat well, get alot of rest and insist the doctors do what it takes to get you some answers.

We're here anytime you need us!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Monday, December 8, 2008 4:17:50 PMSubject: new to group

Hello everyone my Name is I was just Diagnosed with pulmonary Fiborosis .And I am only thrity six years old.I have been suffering with Chronic Sinus for years and short of breath my pulse rate was 150 with exercise and lying down so the cardligest put me on cardizem for my heart rate which .is still high and lightheaded and headache and eye troble plus dizzyness and hard time doing activites. my lungs feel very short of breath my Pulmogligest. says it is only the begining of int.fibrosios. I am very upset.I am a Mother of 4 Boy's and wife.this has been a long process. I wonder if any one can get me some answers to what is the process.thanks DENISE

[Guest guest]

Hi and welcome! I'm glad that you found us though I am sorry you had reason to look for us in the first place. I am also sorry that you have to cope with all this at your age with a young family.

It would seem to me that your first order of business should be to get yourself an accurate diagnosis. What tests has your pulmonologist done? A high resolution ct scan? a 6 minute walk? What are your oxygen saturations? Has your cardiologist done a stress test? Have they talked about the possibility of lung biopsy?

It's really impossible to speculate on what your process and progression might be when it doesn't sound as though they've given you a nailed down diagnosis. There are over 200 different types of interstitial lung disease that can cause pulmonary fibrosis. There are a few that are more common than others and two that really tend to stand out as the most common. Those are UIP (usual interstitial pneumonia) and NSIP (non-specific interstitial pneumonitis).

You really need more information about what is going on with your body? Are you in the US? If you are I would suggest getting yourself to the closest university medical center that has a pulmonology dept that deals with ILD. I live in Durham, NC and I go to Duke University Medical Center. It's at places like that where it can be easier to get a more solid diagnosis. Then you will have more information and a basis on which to proceed.

Unfortunately treatment options are limited for most pulmonary fibrosis. There is no way to reverse scarring once it occurs. Depending on the type progression can sometimes be slowed or stopped and down the road there is the possibility of lung transplant should you choose it and qualify.

I know that you feel really overwhelmed right now. We understand. You've reached a group of people who "get it". We have walked in your shoes, some of us for many years. Try not to panic. There is no expiration date tatooed on your body. Concentrate on gathering information and looking after yourself. Eat well, get alot of rest and insist the doctors do what it takes to get you some answers.

We're here anytime you need us!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Monday, December 8, 2008 4:17:50 PMSubject: new to group

Hello everyone my Name is I was just Diagnosed with pulmonary Fiborosis .And I am only thrity six years old.I have been suffering with Chronic Sinus for years and short of breath my pulse rate was 150 with exercise and lying down so the cardligest put me on cardizem for my heart rate which .is still high and lightheaded and headache and eye troble plus dizzyness and hard time doing activites. my lungs feel very short of breath my Pulmogligest. says it is only the begining of int.fibrosios. I am very upset.I am a Mother of 4 Boy's and wife.this has been a long process. I wonder if any one can get me some answers to what is the process.thanks DENISE

[Guest guest]

Hello ,

Welcome to our Group... I'm so sorry you have copped this... another one who's way too young to be dealing with it all!

I can only tell you that in the early days after diagnosis it's NORMAL to be in shock & unable to take in huge amounts of detail. One thing though is that evryone's progression differs wildly... lots of folk on this Board have had their condition for many, many years. What happens for one of us doesn't necessarily happen for others. There are so many differnet FORMS of PF... it's really helpful to know whicvh version of PF you are dealing with.

For me I sat around like a stunned mullet for months hardly daring to do anything (on Doctors advice!). Now 1 1/2 years down the track I've reagined my confidence thanks to starting a Pulmponary Rehab Program & have slowly built up my exercise capacity. Now my body is way fitter & doesn't demand so much oxygen. My breathless (SOB = Shortness of Breath) has decreased. I feel heaps better than I did a year ago!

My lungs probably haven't improved any but my body is coping better than it was!

My family went into PANIC Mode initially but everyone has calmed down & we take each day as it comes... so far so good...

You'll hear a lot about being pronounced STABLE.. that's like winning a great BIG PRIZE... as good as it gets in PF World.

Stick with us, ask questions, read back through the old Posts on the Web- site... ther's heaps in there.

Regards,

in Australia (Oz)

>> Hello everyone my Name is I was just Diagnosed with pulmonary > Fiborosis .> And I am only thrity six years old.I have been suffering with Chronic > Sinus for years and short of breath my pulse rate was 150 with > exercise and lying down so the cardligest put me on cardizem for my > heart rate which .is still high and lightheaded and headache and eye > troble plus dizzyness and hard time doing activites. my lungs feel very > short of breath my Pulmogligest.says it is only the begining of > int.fibrosios.I am very upset.I am a Mother of 4 Boy's and wife.> this has been a long process. I wonder if any one can get me some > answers to what is the process.> > > > thanks DENISE>