Re: Digital Clubbing Open To All

[Guest guest]

Mayleen....I'm confused with your numerous questions....what sort of an outline or disease profile are you trying to put together? YOU know about YOUR ILD. That is what matters, is YOU and YOUR symptoms....

You do not ask questions about ILD and you do not talk about ILD. Your other issues do not belong on this board.

I have to be up front with you and tell you I question your motives here on our board.

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

Digital Clubbing Open "To All"

To All !! Please share,

Pleae give me information on when you got it, or noticed it, how it has progressed. How soon after diagnosis did you get it? Please share all that you are comfortable speaking of. Thank you !!!

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

[Guest guest]

Description

Welcome to the Pulmonary Fibrosis Foundation's most active on-line support group for patients. We're here to support one another as we learn from each other about idiopathic pulmonary fibrosis (IPF) and pulmonary fibrosis (PF). This will be a safe environment where patients can share stories, concerns, fears, etc. about IPF and PF. It says as we learn from one another about IPF. Learn being the operative word. Learn is what I am trying to do. Learn. If I cannot ask a question about a symtom of ILD then what?? I am confussed. Support, share stories, concerns, fears, all which I have. I am just different. I do not understand !! Any of it. Isn't digital clubbing part of it ?????

What is there to question?

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

Digital Clubbing Open "To All"

To All !! Please share,

Pleae give me information on when you got it, or noticed it, how it has progressed. How soon after diagnosis did you get it? Please share all that you are comfortable speaking of. Thank you !!!

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

[Guest guest]

Apparently I missed a post from you asking about clubbing. I saw the subject line but did not see it in a post.

Yes, clubbing can be a symptom. There are pictures of clubbing on the photo page.

Is this what YOU have?

Start again Mayleen....what symptoms are YOU having since your dx (diagnosis) with ILD? Tell us how YOU are feeling....with ILD....how was ILD dx, do you see a pulmonologist? Have you had scans and/or breathing tests? These are questions any newbie may be asked.

Are you sure you have ILD when you have so many problems with MCS? Let's hope perhaps it is not an ILD.

I'll say it only one more time in trying to come to an understanding.......Yes, our board IS to support, share stories, concerns, fears.....about IPF/PF. You have written instead about MCS and Nutrition.

I will be signing off soon.

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

Digital Clubbing Open "To All"

To All !! Please share,

Pleae give me information on when you got it, or noticed it, how it has progressed. How soon after diagnosis did you get it? Please share all that you are comfortable speaking of. Thank you !!!

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

[Guest guest]

Mayleen, Not all of us have clubbing as

part of our symptoms.

We all come with many different symptoms for more than 200 forms of ILD.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna be

iron like a lion in Zion” Bob Marley

dragonflymcs wrote:

Description

Welcome to the

Pulmonary Fibrosis Foundation's most active on-line support group for

patients. We're here to support one another as we learn from each other

about idiopathic pulmonary fibrosis (IPF) and pulmonary fibrosis (PF).

This will be a safe environment where patients can share stories,

concerns, fears, etc. about IPF and PF.

It says as we learn from one another

about IPF. Learn being the operative word. Learn is what I am trying

to do. Learn. If I cannot ask a question about a symtom of ILD then

what?? I am confussed. Support, share stories, concerns, fears, all

which I have. I am just different. I do not understand !! Any of it.

Isn't digital clubbing part of it ?????

What

is there to question?

dragonflymcs

Mayleen 02/07

ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

-----

Original Message ----

From: Sher Bauman <bofuswbcable (DOT) net>

To: Breathe-Support

Sent: Friday, May 23, 2008 5:38:36 PM

Subject: Re: Digital Clubbing Open "To All"

Mayleen....I' m confused with

your numerous questions... .what sort of an outline or disease profile

are you trying to put together? YOU know about YOUR ILD. That is what

matters, is YOU and YOUR symptoms....

You do not ask questions about

ILD and you do not talk about ILD. Your other issues do not belong on this

board.

I have to be up front with you

and tell you I question your motives here on our board.

Mama-Sher, age 69.IPF 3/06, NSIP

4/08 OR.

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

-----

Original Message -----

From:

dragonflymcs

To:

Breathe-Support@

yahoogroups. com

Sent:

Friday, May 23, 2008 1:38 PM

Subject:

Digital Clubbing Open "To All"

To All !! Please share,

Pleae give me information on

when you got it, or noticed it, how it has progressed. How soon after

diagnosis did you get it? Please share all that you are

comfortable speaking of. Thank you !!!

God

Bless !!

dragonflymcs

Mayleen

02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

No virus found in this incoming message.

Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.0/1462 - Release Date: 5/23/2008 7:20 AM

[Guest guest]

> I had the clubbing before I was Diagnosed, it is one of the reasons

they did the lung biopsy. WE have been able to trace it back to 4 years

before Dx. I was going through some tough times and I just ignored it.

Hope this helps. Kathy53dx10/04/In.

> To All !! Please share,

> Pleae give me information on when you got it, or noticed it, how it

has progressed. How soon after diagnosis did you get it? Please share

all that you are comfortable speaking of. Thank you !!!

>

>

> God Bless !!

> dragonflymcs

> Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

>