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Sissel, Hi, Hope you are doing well. We do have a member in Denmark that I

know of. Her name is Astrid. Heidi will probably know more. Hope you are

doing okay. Bet it is cold there. Hope you had a very Happy New Year.

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Hello Heidi.

I want an address-list. Will you please send me one?

Name Sissel Thomsen

Address Bekkelundsgt 6, 4024 Stavanger, Norway

E.mail sissel@...

Birthday 20. 03.

I want to see if there are any from Norway, Denmark or Sweden. Its easy to talk with them in my own language.

Greeting from Sissel

Addresses

This post is for all our new Members that have joint the greatest support Group on Line. Please Read and Replay ASAP.

Hallo all new members !!!!

I would like to take the time to say to each of you " Herzlich Willkommen " to this fine group.

I hope you all will post real soon so we do get to know each other a little better. I would like to tell you all about this group here.

My name is Heidi also know as Mrs. Nosey.

It is my Husband that has this darn RP. Right

now he is doing great. He is down on his Prednison to 2 mg a day. He also takes 800mg

of Ibuprofen 3 x a day. Then he takes 2 different stomach medicine to protect his stomach. The are Prilosec 2x a day and Cytotec 100mg 4 x a day. He also takes Vitamins : Multy Vat. 1 x day, E 1000mg in the morning E 400mg in the evening, B12, 2 Extra Strength Tums ( Sugar Free ) 3 x a day.This is for Calcium plus it does not hurt the stomach.The most important thing is do take your medicine and Vitamins ON TIME EVERYDAY LIKE YOU SHOULD !!!!!!! And never

skip !!!!! Ja at times you might get to feel better and think O I am doing great today I wont need it today. WRONG !!!!!!! Most of the RP'ers need

to take it all the time in order to keep it in a sleeping mood. Check with your DRs. OK Plus remember when you been on a high dose of Prednison and starting to cut down you need to do it very SLOW !!!!! The mayo clinic told us once you are down to 10 mg then go down only 1 mg a month. The Prednison does come in the 1 mg dose!!!!

Don"s RP has been in sleeping mood for quit a few months now. But believe me he does NOT miss any medicine or Vitamins. Now to the rest of the offers the group has. We have a address list of all our members here. If you would like to have one I be happy to send you one. Here is how you can get one. Yup, there is a catch too this LOL All you need to do is send me your

Full name with home address ,Phone # , Birthday ( do not have to have the year ) your Email addy . I in turn will print you one and send it to you true slow snail mail. But the most important thing is you got to do is remember

YOU MAY NOT GIVE OUT ANY OF THIS INFORMATION TO ANY ONE OUT SIDE THIS GROUP !!!!!!!!!! This is only Information for the group use. So here is my addy .

heidi@...

Believe me it is so nice to have you might even get a Phone call from our Phone Bandit here . LOL Ok I just hope and pray you all keep posting and ask all the ? you have. We talk about the whole person here not just RP. We cry and laugh together. Yup, we like jokes too. LOL

Your Family member also can post if the like.

Well that all from Mrs. Nosey right now.

Sending you all a warm gentle Hug from Okie

land.

Heidi

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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  • 2 months later...
Guest guest

This post is for all our new Members that have joint the greatest support Group on Line. Please Read and Replay ASAP.

Hallo all new members !!!!

I would like to take the time to say to each of you " Herzlich Willkommen " to this fine group.

I hope you all will post real soon so we do get to know each other a little better. I would like to tell you all about this group here.

My name is Heidi also know as Mrs. Nosey.

It is my Husband that has this darn RP. Right

now he is doing great. He is down on his Prednison to 0 mg a day. He also takes 800mg

of Ibuprofen 3 x a day. Then he takes 2 different stomach medicine to protect his stomach. The are Prilosec 2x a day and Cytotec 100mg 4 x a day. He also takes Vitamins : Multy Vat. 1 x day, E 1000mg in the morning E 400mg in the evening, B12, 2 Extra Strength Tums ( Sugar Free ) 3 x a day.This is for Calcium plus it does not hurt the stomach.The most important thing is do take your medicine and Vitamins ON TIME EVERYDAY LIKE YOU SHOULD !!!!!!! And never

skip !!!!! Ja at times you might get to feel better and think O I am doing great today I wont need it today. WRONG !!!!!!! Most of the RP'ers need

to take it all the time in order to keep it in a sleeping mood. Check with your DRs. OK Plus remember when you been on a high dose of Prednison and starting to cut down you need to do it very SLOW !!!!! The mayo clinic told us once you are down to 10 mg then go down only 1 mg a month. The Prednison does come in the 1 mg dose!!!!

Don"s RP has been in sleeping mood for quit a few months now. But believe me he does NOT miss any medicine or Vitamins. Now to the rest of the offers the group has. We have a address list of all our members here. If you would like to have one I be happy to send you one. Here is how you can get one. Yup, there is a catch too this LOL All you need to do is send me your

Full name with home address ,Phone # , Birthday ( do not have to have the year ) your Email addy . I in turn will print you one and send it to you true slow snail mail. But the most important thing is you got to do is remember

YOU MAY NOT GIVE OUT ANY OF THIS INFORMATION TO ANY ONE OUT SIDE THIS GROUP !!!!!!!!!! This is only Information for the group use. So here is my addy .

heidi@...

Believe me it is so nice to have you might even get a Phone call from our Phone Bandit here . LOL Ok I just hope and pray you all keep posting and ask all the ? you have. We talk about the whole person here not just RP. We cry and laugh together. Yup, we like jokes too. LOL

Your Family member also can post if the like.

Well that all from Mrs. Nosey right now.

Sending you all a warm gentle Hug from Okie

land.

Heidi

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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  • 3 weeks later...
Guest guest

This post is for all our new Members that have joint the greatest support Group on Line. Please Read and Replay ASAP.

Hallo all new members !!!!

I would like to take the time to say to each of you " Herzlich Willkommen " to this fine group.

I hope you all will post real soon so we do get to know each other a little better. I would like to tell you all about this group here.

My name is Heidi also know as Mrs. Nosey.

It is my Husband that has this darn RP. Right

now he is doing great. He is down on his Prednison to 1 mg a day. He also takes 800mg

of Ibuprofen 3 x a day. Then he takes 2 different stomach medicine to protect his stomach. The are Prilosec 2x a day and Cytotec 100mg 4 x a day. He also takes Vitamins : Multy Vat. 1 x day, E 1000mg in the morning E 400mg in the evening, B12, 2 Extra Strength Tums ( Sugar Free ) 3 x a day.This is for Calcium plus it does not hurt the stomach.The most important thing is do take your medicine and Vitamins ON TIME EVERYDAY LIKE YOU SHOULD !!!!!!! And never

skip !!!!! Ja at times you might get to feel better and think O I am doing great today I wont need it today. WRONG !!!!!!! Most of the RP'ers need

to take it all the time in order to keep it in a sleeping mood. Check with your DRs. OK Plus remember when you been on a high dose of Prednison and starting to cut down you need to do it very SLOW !!!!! The mayo clinic told us once you are down to 10 mg then go down only 1 mg a month. The Prednison does come in the 1 mg dose!!!!

Don"s RP has been in sleeping mood for quit a few months now. But believe me he does NOT miss any medicine or Vitamins. Now to the rest of the offers the group has. We have a address list of all our members here. If you would like to have one I be happy to send you one. Here is how you can get one. Yup, there is a catch too this LOL All you need to do is send me your

Full name with home address ,Phone # , Birthday ( do not have to have the year ) your Email addy . I in turn will print you one and send it to you true slow snail mail. But the most important thing is you got to do is remember

YOU MAY NOT GIVE OUT ANY OF THIS INFORMATION TO ANY ONE OUT SIDE THIS GROUP !!!!!!!!!! This is only Information for the group use. So here is my addy .

heidi@...

Believe me it is so nice to have you might even get a Phone call from our Phone Bandit here . LOL Ok I just hope and pray you all keep posting and ask all the ? you have. We talk about the whole person here not just RP. We cry and laugh together. Yup, we like jokes too. LOL

Your Family member also can post if the like.

Well that all from Mrs. Nosey right now.

Sending you all a warm gentle Hug from Okie

land.

Heidi

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Share on other sites

  • 4 weeks later...
Guest guest

Subject: Addresses

This post is for all our new Members that have joint the greatest support Group on Line. Please Read and Replay ASAP.

Hallo all new members !!!!

I would like to take the time to say to each of you " Herzlich Willkommen " to this fine group.

I hope you all will post real soon so we do get to know each other a little better. I would like to tell you all about this group here.

My name is Heidi also know as Mrs. Nosey.

It is my Husband that has this darn RP. Right

now he is doing great. He is down on his Prednison to 2 mg a day. He also takes 800mg

of Ibuprofen 3 x a day. Then he takes 2 different stomach medicine to protect his stomach. The are Prilosec 2x a day and Cytotec 100mg 4 x a day. He also takes Vitamins : Multy Vat. 1 x day, E 1000mg in the morning E 400mg in the evening, B12, 2 Extra Strength Tums ( Sugar Free ) 3 x a day.This is for Calcium plus it does not hurt the stomach.The most important thing is do take your medicine and Vitamins ON TIME EVERYDAY LIKE YOU SHOULD !!!!!!! And never

skip !!!!! Ja at times you might get to feel better and think O I am doing great today I wont need it today. WRONG !!!!!!! Most of the RP'ers need

to take it all the time in order to keep it in a sleeping mood. Check with your DRs. OK Plus remember when you been on a high dose of Prednison and starting to cut down you need to do it very SLOW !!!!! The mayo clinic told us once you are down to 10 mg then go down only 1 mg a month. The Prednison does come in the 1 mg dose!!!!

Don"s RP has been in sleeping mood for quit a few months now. But believe me he does NOT miss any medicine or Vitamins. Now to the rest of the offers the group has. We have a address list of all our members here. If you would like to have one I be happy to send you one. Here is how you can get one. Yup, there is a catch too this LOL All you need to do is send me your

Full name with home address ,Phone # , Birthday ( do not have to have the year ) your Email addy . I in turn will print you one and send it to you true slow snail mail. But the most important thing is you got to do is remember

YOU MAY NOT GIVE OUT ANY OF THIS INFORMATION TO ANY ONE OUT SIDE THIS GROUP !!!!!!!!!! This is only Information for the group use. So here is my addy .

heidi@...

Believe me it is so nice to have you might even get a Phone call from our Phone Bandit here . LOL Ok I just hope and pray you all keep posting and ask all the ? you have. We talk about the whole person here not just RP. We cry and laugh together. Yup, we like jokes too. LOL

Your Family member also can post if the like.

Well that all from Mrs. Nosey right now.

Sending you all a warm gentle Hug from Okie

land.

Heidi

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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  • 6 years later...

,

Whose snail mail do want??? By the way I love your Quotes in your

messages.

Greg

>

> I'm just getting my Christmas cards out so if you'd like a card,

especially if you've moved this past year(Like Rose!)....please e-mail

me your snail mail addy. Thanks. S.

>

> 29:11, For I know the plans I have for you, " declares the

> Lord, " plans to prosper you and not to harm you, plans to give you

hope

> and a future. " If anyone would come after Me, he must deny himself "

( 16:24 NIV).

>

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REMEMBER GANG--- SEND YOUR ADDRESS TO THE PERSON'S PRIVATE EMAIL ADDRESS-- NOT TO THE GROUP SITE! THIS IS A SITE WHERE ANYONE CAN GET YOUR ADDRESS IF POSTED TO THE GROUP, SO-- SEND IT TO THOSE YOU WANT TO HAVE ACCESS TO THAT INFO-- PRIVATELY!!

SORRY, THE MODS THIS YEAR AREN'T ABLE TO PUT TOGETHER A LIST-- SO MAKE SURE IF YOU DO THIS, YOU UPDATE YOUR PERSONAL CONTACT LIST.

tAKE CARE,

Tracie

NS Co-owner/moderator

PS. MOD's if one of you want to take it on-- let me know.

To: neurosarcoidosis Sent: Friday, December 19, 2008 5:45:13 PMSubject: addresses

I'm just getting my Christmas cards out so if you'd like a card, especially if you've moved this past year(Like Rose!)....please e-mail me your snail mail addy. Thanks. S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

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