new to group

[Guest guest]

That's very intresting. I didn't know that. Our first doc that did

the tenotomy still gave Ava cast changes weekly. She had 10 all

together. Then they put her in the DBB and her R foot is terrible but

we are seeing Dr. Ponseti on Monday. Can't wait!!! In the DBB she is

locked out to 60-60, should she be turned out further??

KK

Livi 01/03

Ava 05/04 BCF,DBB 2wks and worthless??

> >Interesting - and the poor baby being in pain! I thought the 3

week cast

> >was only for tenotomy patients, so the heel could heal. I havent'

heard

> >of a 3 week cast for any other purpose. Let us know what happens.

[Guest guest]

That's very intresting. I didn't know that. Our first doc that did

the tenotomy still gave Ava cast changes weekly. She had 10 all

together. Then they put her in the DBB and her R foot is terrible but

we are seeing Dr. Ponseti on Monday. Can't wait!!! In the DBB she is

locked out to 60-60, should she be turned out further??

KK

Livi 01/03

Ava 05/04 BCF,DBB 2wks and worthless??

> >Interesting - and the poor baby being in pain! I thought the 3

week cast

> >was only for tenotomy patients, so the heel could heal. I havent'

heard

> >of a 3 week cast for any other purpose. Let us know what happens.

[Guest guest]

That's very intresting. I didn't know that. Our first doc that did

the tenotomy still gave Ava cast changes weekly. She had 10 all

together. Then they put her in the DBB and her R foot is terrible but

we are seeing Dr. Ponseti on Monday. Can't wait!!! In the DBB she is

locked out to 60-60, should she be turned out further??

KK

Livi 01/03

Ava 05/04 BCF,DBB 2wks and worthless??

> >Interesting - and the poor baby being in pain! I thought the 3

week cast

> >was only for tenotomy patients, so the heel could heal. I havent'

heard

> >of a 3 week cast for any other purpose. Let us know what happens.

[Guest guest]

That's very intresting. I didn't know that. Our first doc that did

the tenotomy still gave Ava cast changes weekly. She had 10 all

together. Then they put her in the DBB and her R foot is terrible but

we are seeing Dr. Ponseti on Monday. Can't wait!!! In the DBB she is

locked out to 60-60, should she be turned out further??

KK

Livi 01/03

Ava 05/04 BCF,DBB 2wks and worthless??

> >Interesting - and the poor baby being in pain! I thought the 3

week cast

> >was only for tenotomy patients, so the heel could heal. I havent'

heard

> >of a 3 week cast for any other purpose. Let us know what happens.

[Guest guest]

Bonnie,

when I'm tired especially, I am off balance, and dizzy. the more tired I am the worse it gets. of course I am tired most the time, but increase activity makes it worse, the only thing that makes it better is sleep,zzzzzzzzzzzzzzz

God Bless,

Marla

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]

Bonnie,

when I'm tired especially, I am off balance, and dizzy. the more tired I am the worse it gets. of course I am tired most the time, but increase activity makes it worse, the only thing that makes it better is sleep,zzzzzzzzzzzzzzz

God Bless,

Marla

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]

Bonnie,

when I'm tired especially, I am off balance, and dizzy. the more tired I am the worse it gets. of course I am tired most the time, but increase activity makes it worse, the only thing that makes it better is sleep,zzzzzzzzzzzzzzz

God Bless,

Marla

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]

feeling like cobwebs on my face

Rose,

I have this a lot, I figured it was related to the Sarc, but have not heard anyone mention it before. again when I am really tired, it is worse, I even start like picking at my face, cause I'm sure something is there!!!

Marla

RE: new to group

Hi, Bonnie. Welcome to the group. Before I forget to tell you, there aresome great links, if you scroll down past the bottom of your originalmessage. You said you had sarc in the lymph nodes & lungs; did you haveany 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 manydifferent ways. I was diagnosed with sarc by a biopsy of lymph nodes in mychest in 1994. My lungs were clear & I had no symptoms, so everybodypretty well forgot about it. 5 years later, I had sudden hearing loss inthe right ear, then 5 months later a left Bell's palsy, then hearing lossin the left ear a month after that. We know now that this was all a resultof cranial nerve involvement by the sarc, but at the time, it was allchalked up to viruses. Then a year later I started having weird systemicsymptoms: feeling like cobwebs on my face, severe fatigue & muscleweakness, weight loss, balance problems, tremors, another Bell's palsy, legpain & electric shock sensations, vertigo, trigeminal neuralgia, & eventually numbness & burning pain in my feet. Most of these symptoms wereagain blamed on a virus by my PCP. I finally saw a neurologist in spring2001, who thought it was NS. But even with this history, plus a lungbiopsy positive for sarc, he was reluctant to treat because the spinal tap,MRI, labs, etc. were normal. (I recently saw a sarc specialist at theUniv. of Cincinnati who said my spinal tap was not normal). I didn't gettreated for another year, after I paid out-of-pocket to see a specialist inAtlanta. So they basically have to rule out any other cause of yoursymptoms, & if you have a biopsy of anything (nodes, lung, skin) positivefor sarc, it's more likely someone will make the call of neurosarc. It canbe exceedingly frustrating; others will share their stories & give youadditional 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 thisgives you a start & didn't overwhelm you. Again, welcome. Rose, moderatorOriginal Message:-----------------From: Bonnie Pearson quiltenbe@...Date: Tue, 21 Jun 2005 02:09:10 -0000To: Neurosarcoidosis Subject: new to groupHi, 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 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]

feeling like cobwebs on my face

Rose,

I have this a lot, I figured it was related to the Sarc, but have not heard anyone mention it before. again when I am really tired, it is worse, I even start like picking at my face, cause I'm sure something is there!!!

Marla

RE: new to group

Hi, Bonnie. Welcome to the group. Before I forget to tell you, there aresome great links, if you scroll down past the bottom of your originalmessage. You said you had sarc in the lymph nodes & lungs; did you haveany 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 manydifferent ways. I was diagnosed with sarc by a biopsy of lymph nodes in mychest in 1994. My lungs were clear & I had no symptoms, so everybodypretty well forgot about it. 5 years later, I had sudden hearing loss inthe right ear, then 5 months later a left Bell's palsy, then hearing lossin the left ear a month after that. We know now that this was all a resultof cranial nerve involvement by the sarc, but at the time, it was allchalked up to viruses. Then a year later I started having weird systemicsymptoms: feeling like cobwebs on my face, severe fatigue & muscleweakness, weight loss, balance problems, tremors, another Bell's palsy, legpain & electric shock sensations, vertigo, trigeminal neuralgia, & eventually numbness & burning pain in my feet. Most of these symptoms wereagain blamed on a virus by my PCP. I finally saw a neurologist in spring2001, who thought it was NS. But even with this history, plus a lungbiopsy positive for sarc, he was reluctant to treat because the spinal tap,MRI, labs, etc. were normal. (I recently saw a sarc specialist at theUniv. of Cincinnati who said my spinal tap was not normal). I didn't gettreated for another year, after I paid out-of-pocket to see a specialist inAtlanta. So they basically have to rule out any other cause of yoursymptoms, & if you have a biopsy of anything (nodes, lung, skin) positivefor sarc, it's more likely someone will make the call of neurosarc. It canbe exceedingly frustrating; others will share their stories & give youadditional 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 thisgives you a start & didn't overwhelm you. Again, welcome. Rose, moderatorOriginal Message:-----------------From: Bonnie Pearson quiltenbe@...Date: Tue, 21 Jun 2005 02:09:10 -0000To: Neurosarcoidosis Subject: new to groupHi, 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 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]

feeling like cobwebs on my face

Rose,

I have this a lot, I figured it was related to the Sarc, but have not heard anyone mention it before. again when I am really tired, it is worse, I even start like picking at my face, cause I'm sure something is there!!!

Marla

RE: new to group

Hi, Bonnie. Welcome to the group. Before I forget to tell you, there aresome great links, if you scroll down past the bottom of your originalmessage. You said you had sarc in the lymph nodes & lungs; did you haveany 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 manydifferent ways. I was diagnosed with sarc by a biopsy of lymph nodes in mychest in 1994. My lungs were clear & I had no symptoms, so everybodypretty well forgot about it. 5 years later, I had sudden hearing loss inthe right ear, then 5 months later a left Bell's palsy, then hearing lossin the left ear a month after that. We know now that this was all a resultof cranial nerve involvement by the sarc, but at the time, it was allchalked up to viruses. Then a year later I started having weird systemicsymptoms: feeling like cobwebs on my face, severe fatigue & muscleweakness, weight loss, balance problems, tremors, another Bell's palsy, legpain & electric shock sensations, vertigo, trigeminal neuralgia, & eventually numbness & burning pain in my feet. Most of these symptoms wereagain blamed on a virus by my PCP. I finally saw a neurologist in spring2001, who thought it was NS. But even with this history, plus a lungbiopsy positive for sarc, he was reluctant to treat because the spinal tap,MRI, labs, etc. were normal. (I recently saw a sarc specialist at theUniv. of Cincinnati who said my spinal tap was not normal). I didn't gettreated for another year, after I paid out-of-pocket to see a specialist inAtlanta. So they basically have to rule out any other cause of yoursymptoms, & if you have a biopsy of anything (nodes, lung, skin) positivefor sarc, it's more likely someone will make the call of neurosarc. It canbe exceedingly frustrating; others will share their stories & give youadditional 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 thisgives you a start & didn't overwhelm you. Again, welcome. Rose, moderatorOriginal Message:-----------------From: Bonnie Pearson quiltenbe@...Date: Tue, 21 Jun 2005 02:09:10 -0000To: Neurosarcoidosis Subject: new to groupHi, 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 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,

I'm glad you've found us, you will get alot of support and information from these very caring people. My husband has the same issues that you are having right now, plus some that you haven't mentioned and was having a very difficult time working - although he would not give up working until the doc "forced" him to (he's a 4th grade teacher). Since he went on disability he can't even imagine how he was able to get through the day while he is working. He spends alot of time sleeping and is very fatigued when he's awake. The reason I am telling you this is because there comes a point when you need to take that step. I don't know if you are at that point now, however, when and if you do you have the knowledge of someone who has been there.

As a caregiver, the one thing that I have learned is that the people in this group are very knowledgeable and I completely trust what I read if it is generated through the PSC Partners group. At the beginning I went to the internet and it scared me to death - but after I found PSC Partners and this group I was reassured and finally had an outlet with others that were experiencing similar things that our family was experiencing.

Barbara (wife of , PSC '07, Chronic Pancreatitis, Diabetes, IBD)

[Guest guest]

Dawn,

I'm glad you've found us, you will get alot of support and information from these very caring people. My husband has the same issues that you are having right now, plus some that you haven't mentioned and was having a very difficult time working - although he would not give up working until the doc "forced" him to (he's a 4th grade teacher). Since he went on disability he can't even imagine how he was able to get through the day while he is working. He spends alot of time sleeping and is very fatigued when he's awake. The reason I am telling you this is because there comes a point when you need to take that step. I don't know if you are at that point now, however, when and if you do you have the knowledge of someone who has been there.

As a caregiver, the one thing that I have learned is that the people in this group are very knowledgeable and I completely trust what I read if it is generated through the PSC Partners group. At the beginning I went to the internet and it scared me to death - but after I found PSC Partners and this group I was reassured and finally had an outlet with others that were experiencing similar things that our family was experiencing.

Barbara (wife of , PSC '07, Chronic Pancreatitis, Diabetes, IBD)

[Guest guest]

Dawn,

I'm glad you've found us, you will get alot of support and information from these very caring people. My husband has the same issues that you are having right now, plus some that you haven't mentioned and was having a very difficult time working - although he would not give up working until the doc "forced" him to (he's a 4th grade teacher). Since he went on disability he can't even imagine how he was able to get through the day while he is working. He spends alot of time sleeping and is very fatigued when he's awake. The reason I am telling you this is because there comes a point when you need to take that step. I don't know if you are at that point now, however, when and if you do you have the knowledge of someone who has been there.

As a caregiver, the one thing that I have learned is that the people in this group are very knowledgeable and I completely trust what I read if it is generated through the PSC Partners group. At the beginning I went to the internet and it scared me to death - but after I found PSC Partners and this group I was reassured and finally had an outlet with others that were experiencing similar things that our family was experiencing.

Barbara (wife of , PSC '07, Chronic Pancreatitis, Diabetes, IBD)

[Guest guest]

--- Thank you, I am looking forward to learning more and seeing how

this disease affects others

[Guest guest]

I just took my husband to Mayo Rochester and he saw Dr Lindor. It was

a great place to go and Dr Lindor is one of the best.

wife to Rick-crohn's, PSC, spondyloarthropathy, Gilbert's

www.jaimeandrick.blogspot.com

>

> Thanks, I have considered Mayo at ville

>

[Guest guest]

I just took my husband to Mayo Rochester and he saw Dr Lindor. It was

a great place to go and Dr Lindor is one of the best.

wife to Rick-crohn's, PSC, spondyloarthropathy, Gilbert's

www.jaimeandrick.blogspot.com

>

> Thanks, I have considered Mayo at ville

>

[Guest guest]

I just took my husband to Mayo Rochester and he saw Dr Lindor. It was

a great place to go and Dr Lindor is one of the best.

wife to Rick-crohn's, PSC, spondyloarthropathy, Gilbert's

www.jaimeandrick.blogspot.com

>

> Thanks, I have considered Mayo at ville

>

[Guest guest]

Hi ,Is Dr. Lindor a hepatologist? I had contacted Dr. Poterucha's office out of recommendation from somebody who has Hepatitis C. It looks like he is Primary Care for Internal Medicine. I would imagine if they think I should see somebody else they would help set that up. I do see that this doctor would work with helping to plan for living with a chronic disease. They nneSubject: Re: New to groupTo: Date: Monday, August 4, 2008, 12:52 AM

I just took my husband to Mayo Rochester and he saw Dr Lindor. It was

a great place to go and Dr Lindor is one of the best.

wife to Rick-crohn's, PSC, spondyloarthropathy , Gilbert's

www.jaimeandrick. blogspot. com

>

> Thanks, I have considered Mayo at ville

>

[Guest guest]

nne,

Asking if Prof. Lindor is a hepatologist

is like asking if Einstein was a physicist. We'll forgive you since you are new

in the group ;-). Prof. Lindor is one of the leading PSC guru's in the world,

if not THE leading PSC guru. If you can get him as your hepatologist that would

definitely ensure you of the best care anyone can ask for.

http://www.mayoclinic.org/bio/10207414.html

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of nne Vasichek

Sent: Monday, August 04, 2008

03:41

To:

Subject: Re: Re: New

to group

Hi ,

Is Dr. Lindor a hepatologist? I had contacted Dr. Poterucha's office out of

recommendation from somebody who has Hepatitis C. It looks like he is Primary

Care for Internal Medicine. I would imagine if they think I should see

somebody else they would help set that up. I do see that this doctor would

work with helping to plan for living with a chronic disease. They

nne

From: megasam2

<megasam2 (AT) yahoo (DOT) com>

Subject: Re: New to group

To:

Date: Monday, August 4, 2008, 12:52 AM

I just took my husband to Mayo Rochester and he saw

Dr Lindor. It was

a great place to go and Dr Lindor is one of the best.

wife to Rick-crohn's, PSC, spondyloarthropathy , Gilbert's

www.jaimeandrick. blogspot. com

>

> Thanks, I have considered Mayo at ville

>

[Guest guest]

nne,

Asking if Prof. Lindor is a hepatologist

is like asking if Einstein was a physicist. We'll forgive you since you are new

in the group ;-). Prof. Lindor is one of the leading PSC guru's in the world,

if not THE leading PSC guru. If you can get him as your hepatologist that would

definitely ensure you of the best care anyone can ask for.

http://www.mayoclinic.org/bio/10207414.html

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of nne Vasichek

Sent: Monday, August 04, 2008

03:41

To:

Subject: Re: Re: New

to group

Hi ,

Is Dr. Lindor a hepatologist? I had contacted Dr. Poterucha's office out of

recommendation from somebody who has Hepatitis C. It looks like he is Primary

Care for Internal Medicine. I would imagine if they think I should see

somebody else they would help set that up. I do see that this doctor would

work with helping to plan for living with a chronic disease. They

nne

From: megasam2

<megasam2 (AT) yahoo (DOT) com>

Subject: Re: New to group

To:

Date: Monday, August 4, 2008, 12:52 AM

I just took my husband to Mayo Rochester and he saw

Dr Lindor. It was

a great place to go and Dr Lindor is one of the best.

wife to Rick-crohn's, PSC, spondyloarthropathy , Gilbert's

www.jaimeandrick. blogspot. com

>

> Thanks, I have considered Mayo at ville

>

[Guest guest]

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 ,

I am also a "" and the mother of 5 boys and 1 girl. I am so sorry that you are dealing with this at such a young age. The process is so different for all of us. I too have had a racing heart and eye problems and of course all of us get tired all the time. I take oil pills for my eyes and that has really helped along with limiting the time I spend reading. To combat the heart racing I have had to slow down. I walk slower, talk slower and take frequent breaks while I am cleaning house or doing activites with my grandkids. One of our other members ( Zena) came up with a 15 minute rule. Every 15 minutes she makes herself take a break until her heart rate returns to normal. I have found that this works great for me. I do much less than I used to and know that slowing down everything on my life is giving me more time and

more years with my family. Good luck to you and God bless- R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: new to groupTo: Breathe-Support Date: Monday, December 8, 2008, 1:17 PM

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 ,

I am also a "" and the mother of 5 boys and 1 girl. I am so sorry that you are dealing with this at such a young age. The process is so different for all of us. I too have had a racing heart and eye problems and of course all of us get tired all the time. I take oil pills for my eyes and that has really helped along with limiting the time I spend reading. To combat the heart racing I have had to slow down. I walk slower, talk slower and take frequent breaks while I am cleaning house or doing activites with my grandkids. One of our other members ( Zena) came up with a 15 minute rule. Every 15 minutes she makes herself take a break until her heart rate returns to normal. I have found that this works great for me. I do much less than I used to and know that slowing down everything on my life is giving me more time and

more years with my family. Good luck to you and God bless- R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: new to groupTo: Breathe-Support Date: Monday, December 8, 2008, 1:17 PM

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 ,

I am also a "" and the mother of 5 boys and 1 girl. I am so sorry that you are dealing with this at such a young age. The process is so different for all of us. I too have had a racing heart and eye problems and of course all of us get tired all the time. I take oil pills for my eyes and that has really helped along with limiting the time I spend reading. To combat the heart racing I have had to slow down. I walk slower, talk slower and take frequent breaks while I am cleaning house or doing activites with my grandkids. One of our other members ( Zena) came up with a 15 minute rule. Every 15 minutes she makes herself take a break until her heart rate returns to normal. I have found that this works great for me. I do much less than I used to and know that slowing down everything on my life is giving me more time and

more years with my family. Good luck to you and God bless- R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: new to groupTo: Breathe-Support Date: Monday, December 8, 2008, 1:17 PM

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