RE: Being a Sarkie- Booklet

[Guest guest]

So I went to see about the booklet....I am sure the information is helpful.....I found myself going through a survey after signing up. I guess i had the wrong thought that I was going to be able to gain access to the information without a series of questions that may or may not help someone else. Perhaps a direct link to the booklet info would be helpful.....just my thoughts....MattSubject: Being a Sarkie- BookletTo: Neurosarcoidosis Date: Wednesday, February 2, 2011, 8:59 AM

I have neuro sarc,along with lung, lymphatic, and other areas, and find it really hard to try and explain how I feel to people. So I sat down and wrote.

Id like to share this with you all, as so many from other sites have been screaming for copies of my booklet, saying it is so true to how they feel and on giving it to their friends and families, they have found them change and get alot more support. Many have even given it to their GP's and consultants, who after reading have gone out and obtained training and better education.

Id like you all to be able to have access to this if you wish, as it seems to have been so popular and helped so many other.

If you would like a copy The website is http://sarcoidosis.ning.com/ and email your details.

"Being a Sarkie". It puts in writing what each one of us tries to explain to those we love.

I hope this helps you all.

[Guest guest]

I'm sorry, Matt. I intended to check this person & her information out before releasing the post to the group. Everyone just be careful; we don't know anything about this. It's easy to be trusting & jump at something that looks fresh & unique, but not all information is accurate or complete. I'll try to look into this very soon.

Ramblin' RoseModerator COLTS STILL ROCK!

To: Neurosarcoidosis From: dmatt1960@...Date: Sun, 6 Feb 2011 18:28:23 -0800Subject: Re: Being a Sarkie- Booklet

So I went to see about the booklet....I am sure the information is helpful.....I found myself going through a survey after signing up. I guess i had the wrong thought that I was going to be able to gain access to the information without a series of questions that may or may not help someone else. Perhaps a direct link to the booklet info would be helpful.....just my thoughts....Matt

Subject: Being a Sarkie- BookletTo: Neurosarcoidosis Date: Wednesday, February 2, 2011, 8:59 AM

I have neuro sarc,along with lung, lymphatic, and other areas, and find it really hard to try and explain how I feel to people. So I sat down and wrote. Id like to share this with you all, as so many from other sites have been screaming for copies of my booklet, saying it is so true to how they feel and on giving it to their friends and families, they have found them change and get alot more support. Many have even given it to their GP's and consultants, who after reading have gone out and obtained training and better education. Id like you all to be able to have access to this if you wish, as it seems to have been so popular and helped so many other.If you would like a copy The website is http://sarcoidosis.ning.com/ and email your details. "Being a Sarkie". It puts in writing what each one of us tries to explain to those we love. I hope this helps you all.

[Guest guest]

Don't get me wrong..I am sure the information is worthwhile..It was just that I hoped to go to the site and access the information, but before you could get to the info..you had to join & take a survey. Guess I really wasn't in the mood to survey last night as the day did not go to well in our house with having 2 major seizures in a row for no explained reason. Matt

Subject: Being a Sarkie- BookletTo: Neurosarcoidosis Date: Wednesday, February 2, 2011, 8:59 AM

I have neuro sarc,along with lung, lymphatic, and other areas, and find it really hard to try and explain how I feel to people. So I sat down and wrote. Id like to share this with you all, as so many from other sites have been screaming for copies of my booklet, saying it is so true to how they feel and on giving it to their friends and families, they have found them change and get alot more support. Many have even given it to their GP's and consultants, who after reading have gone out and obtained training and better education. Id like you all to be able to have access to this if you wish, as it seems to have been so popular and helped so many other.If you would like a copy The website is http://sarcoidosis.ning.com/ and email your details. "Being a Sarkie". It puts in writing what each one of us tries to explain to those we love. I hope

this helps you all.

[Guest guest]

Matt, I hate that continues to suffer these complications. It seems that with all our modern technology, we should at least be able to control seizures. Are there any unexplored options?

Ramblin' RoseModerator COLTS STILL ROCK!

To: Neurosarcoidosis From: dmatt1960@...Date: Mon, 7 Feb 2011 07:22:05 -0800Subject: RE: Being a Sarkie- Booklet

Don't get me wrong..I am sure the information is worthwhile..It was just that I hoped to go to the site and access the information, but before you could get to the info..you had to join & take a survey. Guess I really wasn't in the mood to survey last night as the day did not go to well in our house with having 2 major seizures in a row for no explained reason. Matt

Subject: Being a Sarkie- BookletTo: Neurosarcoidosis Date: Wednesday, February 2, 2011, 8:59 AM

I have neuro sarc,along with lung, lymphatic, and other areas, and find it really hard to try and explain how I feel to people. So I sat down and wrote. Id like to share this with you all, as so many from other sites have been screaming for copies of my booklet, saying it is so true to how they feel and on giving it to their friends and families, they have found them change and get alot more support. Many have even given it to their GP's and consultants, who after reading have gone out and obtained training and better education. Id like you all to be able to have access to this if you wish, as it seems to have been so popular and helped so many other.If you would like a copy The website is http://sarcoidosis.ning.com/ and email your details. "Being a Sarkie". It puts in writing what each one of us tries to explain to those we love. I hope this helps you all.

[Guest guest]

Thanks. None that come to mind. Before Christmas we had to up her prednisone level to combat the granulomas in her brain. Her seizure meds were ok and the levels were fine. She wasnt having seizures. So we are not sure what the issues are now. Doctor is trying to think of what else it might be. Matt

Subject: Being a Sarkie- BookletTo: Neurosarcoidosis Date: Wednesday, February 2, 2011, 8:59 AM

I have neuro sarc,along with lung, lymphatic, and other areas, and find it really hard to try and explain how I feel to people. So I sat down and wrote. Id like to share this with you all, as so many from other sites have been screaming for copies of my booklet, saying it is so true to how they feel and on giving it to their friends and families, they have found them change and get alot more support. Many have even given it to their GP's and consultants, who after reading have gone out and obtained training and better education. Id like you all to be able to have access to this if you wish, as it seems to have been so popular and helped so many other.If you would like a copy The website is http://sarcoidosis.ning.com/ and email your details. "Being a Sarkie". It puts in writing what each

one of us tries to explain to those we love. I hope this helps you all.

[Guest guest]

I hope they come up with something soon.

RE: Being a Sarkie- Booklet

Don't

[Guest guest]

Guys the forum is secured by filling in certain sections to ensure that only

sarc suffers sign up.

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> Subject: RE: Being a Sarkie- Booklet

> To: neurosarcoidosis

> Date: Monday, February 7, 2011, 6:00 PM

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> Matt, I hate that continues to suffer these complications.  It seems

that with all our modern technology, we should at least be able to control

seizures.  Are there any unexplored options?

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> Ramblin' Rose

> Moderator

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> COLTS STILL ROCK!   

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> To: Neurosarcoidosis

> From: dmatt1960@...

> Date: Mon, 7 Feb 2011 07:22:05 -0800

> Subject: RE: Being a Sarkie- Booklet

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[Guest guest]

If you wish to check me out you can look me up on www.uksarcoid.org. the link I

have provided to you all is to the sarcoidosis community Sila where all

Sarcoidosis Sufferers are and gain the most valuable information about

sarcoidosis and a huge base of fellow sarkies for support, so that you dont feel

alone.

The entry form is merely to ensure that you are a valid sufferer and to obtain

approval to the site. As its sensored for spammers and troublemakers, that is

all. There are no gimmics are sales in it.

Im a patient advocate for Sarcoidosis Sufferers who dedicates her time to

uniting and networking sufferers to ensure you all have as much support and

information as possible available to you.

I hope this gives you some reassurances.

>

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> Subject: Being a Sarkie- Booklet

> To: Neurosarcoidosis

> Date: Wednesday, February 2, 2011, 8:59 AM

>

>

>

>

> I have neuro sarc,along with lung, lymphatic, and other areas, and find it

really hard to try and explain how I feel to people. So I sat down and wrote.

>

> Id like to share this with you all, as so many from other sites have been

screaming for copies of my booklet, saying it is so true to how they feel and on

giving it to their friends and families, they have found them change and get

alot more support. Many have even given it to their GP's and consultants, who

after reading have gone out and obtained training and better education.

>

> Id like you all to be able to have access to this if you wish, as it seems to

have been so popular and helped so many other.

>

> If you would like a copy The website is http://sarcoidosis.ning.com/ and email

your details.

>

> " Being a Sarkie " . It puts in writing what each one of us tries to explain to

those we love.

>

> I hope this helps you all.

>

[Guest guest]

e, sorry to be so suspicious, but we've had some bad experiences in the past. I couldn't get the uksarcoid.org link to work. I tried copy & paste, plus typing it in the search engine myself. Is there another link I can try?

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

> To: Neurosarcoidosis > Date: Thu, 10 Feb 2011 18:31:24 +0000> Subject: Re: Being a Sarkie- Booklet> > If you wish to check me out you can look me up on www.uksarcoid.org. the link I have provided to you all is to the sarcoidosis community Sila where all Sarcoidosis Sufferers are and gain the most valuable information about sarcoidosis and a huge base of fellow sarkies for support, so that you dont feel alone.> > The entry form is merely to ensure that you are a valid sufferer and to obtain approval to the site. As its sensored for spammers and troublemakers, that is all. There are no gimmics are sales in it. > > Im a patient advocate for Sarcoidosis Sufferers who dedicates her time to uniting and networking sufferers to ensure you all have as much support and information as possible available to you. > > I hope this gives you some reassurances. > > > > > > > > > > > > Subject: Being a Sarkie- Booklet> > To: Neurosarcoidosis > > Date: Wednesday, February 2, 2011, 8:59 AM> > > > > > > > > > I have neuro sarc,along with lung, lymphatic, and other areas, and find it really hard to try and explain how I feel to people. So I sat down and wrote. > > > > Id like to share this with you all, as so many from other sites have been screaming for copies of my booklet, saying it is so true to how they feel and on giving it to their friends and families, they have found them change and get alot more support. Many have even given it to their GP's and consultants, who after reading have gone out and obtained training and better education. > > > > Id like you all to be able to have access to this if you wish, as it seems to have been so popular and helped so many other.> > > > If you would like a copy The website is http://sarcoidosis.ning.com/ and email your details. > > > > "Being a Sarkie". It puts in writing what each one of us tries to explain to those we love. > > > > I hope this helps you all.> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > 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]

I couldn't get the booklet to come up either.

To: Neurosarcoidosis Sent: Thu, February 10, 2011 12:31:24 PMSubject: Re: Being a Sarkie- Booklet

If you wish to check me out you can look me up on www.uksarcoid.org. the link I have provided to you all is to the sarcoidosis community Sila where all Sarcoidosis Sufferers are and gain the most valuable information about sarcoidosis and a huge base of fellow sarkies for support, so that you dont feel alone.The entry form is merely to ensure that you are a valid sufferer and to obtain approval to the site. As its sensored for spammers and troublemakers, that is all. There are no gimmics are sales in it. Im a patient advocate for Sarcoidosis Sufferers who dedicates her time to uniting and networking sufferers to ensure you all have as much support and information as possible available to you. I hope this gives you some reassurances. > > > > Subject: Being a Sarkie- Booklet> To: Neurosarcoidosis > Date: Wednesday, February 2, 2011,

8:59 AM> > > > > I have neuro sarc,along with lung, lymphatic, and other areas, and find it really hard to try and explain how I feel to people. So I sat down and wrote. > > Id like to share this with you all, as so many from other sites have been screaming for copies of my booklet, saying it is so true to how they feel and on giving it to their friends and families, they have found them change and get alot more support. Many have even given it to their GP's and consultants, who after reading have gone out and obtained training and better education. > > Id like you all to be able to have access to this if you wish, as it seems to have been so popular and helped so many other.> > If you would like a copy The website is http://sarcoidosis.ning.com/ and email your details. > > "Being a Sarkie". It puts in writing what each one of us tries to explain to those we love.

> > I hope this helps you all.>

[Guest guest]

I couldn't get the link she sent; I'm waiting on a response with possibly a different link.

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

To: Neurosarcoidosis From: precisesewing@...Date: Thu, 10 Feb 2011 20:42:44 -0800Subject: Re: Re: Being a Sarkie- Booklet

I couldn't get the booklet to come up either.

To: Neurosarcoidosis Sent: Thu, February 10, 2011 12:31:24 PMSubject: Re: Being a Sarkie- Booklet

If you wish to check me out you can look me up on www.uksarcoid.org. the link I have provided to you all is to the sarcoidosis community Sila where all Sarcoidosis Sufferers are and gain the most valuable information about sarcoidosis and a huge base of fellow sarkies for support, so that you dont feel alone.The entry form is merely to ensure that you are a valid sufferer and to obtain approval to the site. As its sensored for spammers and troublemakers, that is all. There are no gimmics are sales in it. Im a patient advocate for Sarcoidosis Sufferers who dedicates her time to uniting and networking sufferers to ensure you all have as much support and information as possible available to you. I hope this gives you some reassurances. > > > > Subject: Being a Sarkie- Booklet> To: Neurosarcoidosis > Date: Wednesday, February 2, 2011, 8:59 AM> > > > > I have neuro sarc,along with lung, lymphatic, and other areas, and find it really hard to try and explain how I feel to people. So I sat down and wrote. > > Id like to share this with you all, as so many from other sites have been screaming for copies of my booklet, saying it is so true to how they feel and on giving it to their friends and families, they have found them change and get alot more support. Many have even given it to their GP's and consultants, who after reading have gone out and obtained training and better education. > > Id like you all to be able to have access to this if you wish, as it seems to have been so popular and helped so many other.> > If you would like a copy The website is http://sarcoidosis.ning.com/ and email your details. > > "Being a Sarkie". It puts in writing what each one of us tries to explain to those we love. > > I hope this helps you all.>