hi from overwhelmed newbie

[Guest guest]

Hi. I just joined the group and thought I'd say hello and give some

background on my case. I'm a 49 year old female with Avascular

Necrosis (dying bones) caused by excessive steroids in the 80's

(ordered by a doctor to treat neuro problems). I have so far had

both hips and one shoulder replaced and have many other joints that

are in trouble.

Through the last 20+ years my doctors didn't know quite what was

wrong with me but they knew eventually it would declare itself. I

have secondary Sjogren's Syndrome. Two weeks ago I had a skin biopsy

and the results floored everyone - yep, Sarcoidosis. So far it has

been confirmed in my brain and spinal canal and now we are looking at

the heart. My lungs SEEM to be clear but I haven't had anything but

an x-ray on them so far. My doctor is trying to get me into a

tertiary facility so everything can be done at once.

I am quite sick (as I know are you guys too). I am on disability

from the AVN. I was on Plaquenil for 20 years but starting losing my

vision in an alarming way and had to go off. Since then I have been

getting sicker and sicker and my headaches are excrutiating. In

addition, some days I can't do anything but sleep - it's like a

monster takes possession of my brain or something.

That's all the typing I can do for now. Just wanted to say hi, and

glad I found you guys.

Hugs, Michele

[Guest guest]

Hi Michele, I'm Christy. I'm reletively new to the group myself (got diagnosed in January of this year.) I have found so much comfort in reaching out to the members in this group, beacuse neither my family doctor or my Neuro (the only neuro in my town), have ever had a case of NS. So, they are still trying to figure out what to do with me. Right now, they are only treating me symptomatically. Pretty frustrating, but I am glad you are here. Hope you get some comforting information and be just as informative to us! Hope that you begin to feel better soon. As I wish for everyone of us. Welcome.

Christy

Subject: hi from overwhelmed newbieTo: Neurosarcoidosis Date: Wednesday, June 4, 2008, 5:27 PM

Hi. I just joined the group and thought I'd say hello and give some background on my case. I'm a 49 year old female with Avascular Necrosis (dying bones) caused by excessive steroids in the 80's (ordered by a doctor to treat neuro problems). I have so far had both hips and one shoulder replaced and have many other joints that are in trouble.Through the last 20+ years my doctors didn't know quite what was wrong with me but they knew eventually it would declare itself. I have secondary Sjogren's Syndrome. Two weeks ago I had a skin biopsy and the results floored everyone - yep, Sarcoidosis. So far it has been confirmed in my brain and spinal canal and now we are looking at the heart. My lungs SEEM to be clear but I haven't had anything but an x-ray on them so far. My doctor is trying to get me into a tertiary facility so everything can be done at once.I am quite sick (as I know are you guys

too). I am on disability from the AVN. I was on Plaquenil for 20 years but starting losing my vision in an alarming way and had to go off. Since then I have been getting sicker and sicker and my headaches are excrutiating. In addition, some days I can't do anything but sleep - it's like a monster takes possession of my brain or something.That's all the typing I can do for now. Just wanted to say hi, and glad I found you guys.Hugs, Michele

[Guest guest]

Hi , I'm so sorry that you have had to find us.  NS is no fun.  I can't

imagine having the AVN--- your bone marrow has to be so far gone and unable to

produce calcium---  and that alone has to be so very painful. 

Sjogrens Syndrome is one of the issues alot of us deal with-- so many fo the

meds create the dry mouth, dry eyes.  What has helped me the most for that issue

is the Biotene Mouthwash, toothpaste and gel.  They also have a gum that helps

with getting thru the day.  You can find it at most pharmacies.  If not, ask for

it-- it is wonderful!

Know that you have found a family of 500+ people that are all on a similar

journey, and there is a wealth of information-- our ARCHIVES and LINKS have

numerous articles on the various forms of sarc-- so don't hesitate to search

them-- (You'll find the addresses at the bottom of this and all the emails to

the group) and you can print them out and share with your docs. 

Take care, and let us know how we can help,

Tracie

NS Co-owner/moderator

hi from overwhelmed newbie

Hi.  I just joined the group and thought I'd say hello and give some

background on my case.  I'm a 49 year old female with Avascular

Necrosis (dying bones) caused by excessive steroids in the 80's

(ordered by a doctor to treat neuro problems).  I have so far had

both hips and one shoulder replaced and have many other joints that

are in trouble.

Through the last 20+ years my doctors didn't know quite what was

wrong with me but they knew eventually it would declare itself.  I

have secondary Sjogren's Syndrome.  Two weeks ago I had a skin biopsy

and the results floored everyone - yep, Sarcoidosis.  So far it has

been confirmed in my brain and spinal canal and now we are looking at

the heart.  My lungs SEEM to be clear but I haven't had anything but

an x-ray on them so far.  My doctor is trying to get me into a

tertiary facility so everything can be done at once.

I am quite sick (as I know are you guys too).  I am on disability

from the AVN.  I was on Plaquenil for 20 years but starting losing my

vision in an alarming way and had to go off.  Since then I have been

getting sicker and sicker and my headaches are excrutiating.  In

addition, some days I can't do anything but sleep - it's like a

monster takes possession of my brain or something.

That's all the typing I can do for now.  Just wanted to say hi, and

glad I found you guys.

Hugs, Michele

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

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

The Neurosarcoidosis Community

NS CHAT:-  FAITH CHAT:    SUNDAY  4PM-5PM EASTERN TIME

CHATROOM LINK: http://www.sarcbuddies.com/chat

   

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]

Amen on the Biotene products! I wish I would have started using them before my last dry mouth episode. I wouldn't wish that pain on anybody. Welcome to the group, Michele. hugs, 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).Subject: Re: hi from overwhelmed newbieTo: Neurosarcoidosis Date: Thursday, June 5, 2008, 2:48 AM

Hi , I'm so sorry that you have had to find us. NS is no fun. I can't imagine having the AVN--- your bone marrow has to be so far gone and unable to produce calcium--- and that alone has to be so very painful.

Sjogrens Syndrome is one of the issues alot of us deal with-- so many fo the meds create the dry mouth, dry eyes. What has helped me the most for that issue is the Biotene Mouthwash, toothpaste and gel. They also have a gum that helps with getting thru the day. You can find it at most pharmacies. If not, ask for it-- it is wonderful!

Know that you have found a family of 500+ people that are all on a similar journey, and there is a wealth of information- - our ARCHIVES and LINKS have numerous articles on the various forms of sarc-- so don't hesitate to search them-- (You'll find the addresses at the bottom of this and all the emails to the group) and you can print them out and share with your docs.

Take care, and let us know how we can help,

Tracie

NS Co-owner/moderator

hi from overwhelmed newbie

Hi. I just joined the group and thought I'd say hello and give some

background on my case. I'm a 49 year old female with Avascular

Necrosis (dying bones) caused by excessive steroids in the 80's

(ordered by a doctor to treat neuro problems). I have so far had

both hips and one shoulder replaced and have many other joints that

are in trouble.

Through the last 20+ years my doctors didn't know quite what was

wrong with me but they knew eventually it would declare itself. I

have secondary Sjogren's Syndrome. Two weeks ago I had a skin biopsy

and the results floored everyone - yep, Sarcoidosis. So far it has

been confirmed in my brain and spinal canal and now we are looking at

the heart. My lungs SEEM to be clear but I haven't had anything but

an x-ray on them so far. My doctor is trying to get me into a

tertiary facility so everything can be done at once.

I am quite sick (as I know are you guys too). I am on disability

from the AVN. I was on Plaquenil for 20 years but starting losing my

vision in an alarming way and had to go off. Since then I have been

getting sicker and sicker and my headaches are excrutiating. In

addition, some days I can't do anything but sleep - it's like a

monster takes possession of my brain or something.

That's all the typing I can do for now. Just wanted to say hi, and

glad I found you guys.

Hugs, Michele

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

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

The Neurosarcoidosis Community

NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME

CHATROOM LINK: http://www.sarcbudd ies.com/chat

Message Archives:-

http://groups. yahoo.com/ group/Neurosarco idosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups. yahoo.com/ group/Neurosarco idosis/database

[Guest guest]

- it's like a

monster takes possession of my brain or something AMEN,Hi Michele, welcome to the group, I'm sorry you had to find us, but you will find a group of very knowledgeable people, all who are sick, some very sick, some not as sick. I'm sorry you've had so many problems to deal with, and the worse not knowing what it is, there are other drugs for Sarcoid and hopefully your doctor will find something and soon. Yes, those years of steroids are nasty, most of us are dealing with the side effects, or are still on steroids. Interesting they picked up the diagnosis from the skin. But at least you know what you are dealing with. Please feel free to ask questions, rant and rave, or just share. We are here for each other. And this is a great group to be a part of! Marla

Hi. I just joined the group and thought I'd say hello and give some

background on my case. I'm a 49 year old female with Avascular

Necrosis (dying bones) caused by excessive steroids in the 80's

(ordered by a doctor to treat neuro problems). I have so far had

both hips and one shoulder replaced and have many other joints that

are in trouble.

Through the last 20+ years my doctors didn't know quite what was

wrong with me but they knew eventually it would declare itself. I

have secondary Sjogren's Syndrome. Two weeks ago I had a skin biopsy

and the results floored everyone - yep, Sarcoidosis. So far it has

been confirmed in my brain and spinal canal and now we are looking at

the heart. My lungs SEEM to be clear but I haven't had anything but

an x-ray on them so far. My doctor is trying to get me into a

tertiary facility so everything can be done at once.

I am quite sick (as I know are you guys too). I am on disability

from the AVN. I was on Plaquenil for 20 years but starting losing my

vision in an alarming way and had to go off. Since then I have been

getting sicker and sicker and my headaches are excrutiating. In

addition, some days I can't do anything but sleep - it's like a

monster takes possession of my brain or something.

That's all the typing I can do for now. Just wanted to say hi, and

glad I found you guys.

Hugs, Michele

-- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com

'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope

[Guest guest]

Thank you ALL for such a nice welcome. It helps a lot to know that you

are here. I know from experience with the AVN group how helpful

support groups - no, how ESSENTIAL supports groups are. Thank you.

Michele

[Guest guest]

Egads Tracie, that never occurred to me. I'm just finding out about

NS - in AVN I am quite knowledgeable unfortunately. The pain of AVN is

unlike anything I have ever experienced. As the bone dies it produces

gases that expand with nowhere to go. The pressure in the bone

increases and microfractures are created. This can go on for months at

a time without relief. I am quite glad to have had my three worst

joints replaced as the pain level from AVN has dropped dramatically.

Now, to work on these headaches. :-/

Michele

>

> Hi , I'm so sorry that you have had to find us.  NS is no

fun.  I can't imagine having the AVN--- your bone marrow has to be so

far gone and unable to produce calcium---  and that alone has to be so

very painful. 

[Guest guest]

Can you take a good calcium magnesium supplement?  Add some MSM and mineral

supplements to help regenerate all that is going on?  I've done a bunch of posts

on Vit D and calcium issues-- and am in such flare right now myself, that I'm

not able to redo it-- so you can find it in the ARCHIVES-- but I live by

Weil's MD philopsy-- if your body is starved for a nutrient, it forces you to

store up what little bit it gets-- so that it isn't starved for that nutrient. 

This is so very important-- and his take is that gallstones, kidney stones, etc

are from our bodies needing calcium and since the meds we're on deplete it-- the

brain says hide it away here (liver, kidneys, joints, etc) so that you have

extra when you go back to starvation mode. 

Makes more sense to me, and I know it has helped my pain levels to get these

nutrients back into balance--

Sincerely,

Tracie

NS Co-owner/moderator

Re: hi from overwhelmed newbie

Egads Tracie, that never occurred to me.  I'm just finding out about

NS - in AVN I am quite knowledgeable unfortunately.  The pain of AVN is

unlike anything I have ever experienced.  As the bone dies it produces

gases that expand with nowhere to go.  The pressure in the bone

increases and microfractures are created.  This can go on for months at

a time without relief.  I am quite glad to have had my three worst

joints replaced as the pain level from AVN has dropped dramatically. 

Now, to work on these headaches.  :-/

Michele

>

> Hi , I'm so sorry that you have had to find us.  NS is no

fun.  I can't imagine having the AVN--- your bone marrow has to be so

far gone and unable to produce calcium---  and that alone has to be so

very painful. 

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

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

The Neurosarcoidosis Community

NS CHAT:-  FAITH CHAT:    SUNDAY  4PM-5PM EASTERN TIME

CHATROOM LINK: http://www.sarcbuddies.com/chat

   

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]

Oh I LOVE !

No, I have not found a way to tolerate many supplements. They cause

extreme diarrhea and always have. MSM is no good - I'm allergic to

it. I can take magnesium in moderate amounts, but definitely not

calcium. I can't even take a multivitamin. I've tried the natural

brands, liquids, all without success.

I will however, look up your posts. Thanks!

Michele

>

> Can you take a good calcium magnesium supplement?  Add some MSM and

mineral supplements to help regenerate all that is going on?  I've

done a bunch of posts on Vit D and calcium issues-- and am in such

flare right now myself, that I'm not able to redo it-- so you can

find it in the ARCHIVES-- but I live by Weil's MD philopsy--

if your body is starved for a nutrient, it forces you to store up

what little bit it gets-- so that it isn't starved for that

nutrient. 

> This is so very important-- and his take is that gallstones, kidney

stones, etc are from our bodies needing calcium and since the meds

we're on deplete it-- the brain says hide it away here (liver,

kidneys, joints, etc) so that you have extra when you go back to

starvation mode. 

> Makes more sense to me, and I know it has helped my pain levels to

get these nutrients back into balance--

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

>