I am new here and new to this.

[Guest guest]

Well welcome to our group, sorry to meet you because of this dreaded disease. But we a very close group and we all went through and some still going through the new stages of DX. It can be a very scary disease, After 7 yrs of being dx with NS I am still scared at what could happened down the line. But we must all stick together and lean on each other. We are all in the same boat. We are here to answer any questions you may have and help in way we can.

We cry together, laugh together and when nobody understands come to us, because We all understand what your feeling.

Welcome again

many blessings and hugs and a pain free day

It's Tax Time! Get tips, forms and advice on AOL Money Finance.

[Guest guest]

Well welcome to our group, sorry to meet you because of this dreaded disease. But we a very close group and we all went through and some still going through the new stages of DX. It can be a very scary disease, After 7 yrs of being dx with NS I am still scared at what could happened down the line. But we must all stick together and lean on each other. We are all in the same boat. We are here to answer any questions you may have and help in way we can.

We cry together, laugh together and when nobody understands come to us, because We all understand what your feeling.

Welcome again

many blessings and hugs and a pain free day

It's Tax Time! Get tips, forms and advice on AOL Money Finance.

[Guest guest]

I would like to talk to someone about my symptoms and what I am going

through. I am kindof confused and scared about what it is that's going

on. Thank you.

[Guest guest]

I would like to talk to someone about my symptoms and what I am going

through. I am kindof confused and scared about what it is that's going

on. Thank you.

[Guest guest]

, what's going on? how can we help?

sincerely,

Tracie

NS Co-owner/moderator

--- christina wrote:

> I would like to talk to someone about my symptoms

> and what I am going

> through. I am kindof confused and scared about what

> it is that's going

> on. Thank you.

>

>

[Guest guest]

, what's going on? how can we help?

sincerely,

Tracie

NS Co-owner/moderator

--- christina wrote:

> I would like to talk to someone about my symptoms

> and what I am going

> through. I am kindof confused and scared about what

> it is that's going

> on. Thank you.

>

>

[Guest guest]

,

Whatever it is , say something you will feel better and more than

likely someone will have the knowledge for which you are searching.

Believe in yourself as you are the one who really knows who you are.

Trust in the wisdom WE all have from this Journey we all are on

together. Lynne

>

> I would like to talk to someone about my symptoms and what I am going

> through. I am kindof confused and scared about what it is that's going

> on. Thank you.

>

[Guest guest]

,

Whatever it is , say something you will feel better and more than

likely someone will have the knowledge for which you are searching.

Believe in yourself as you are the one who really knows who you are.

Trust in the wisdom WE all have from this Journey we all are on

together. Lynne

>

> I would like to talk to someone about my symptoms and what I am going

> through. I am kindof confused and scared about what it is that's going

> on. Thank you.

>

[Guest guest]

> --- christina wrote:

> > I would like to talk to someone about my symptoms and what I am going

through. I am kindof confused and scared about what it is that's going on.

Thank you.<<

Hi ,

Reaching out and asking questions helps a lot. Read, rest and ask questions.

Best regards to you,

lisa

[Guest guest]

> --- christina wrote:

> > I would like to talk to someone about my symptoms and what I am going

through. I am kindof confused and scared about what it is that's going on.

Thank you.<<

Hi ,

Reaching out and asking questions helps a lot. Read, rest and ask questions.

Best regards to you,

lisa

[Guest guest]

---Thank you so much Tracie for getting back to me so soon. I have

just been recently diagnosed, about 3 weeks ago, and there just

seems to be sooo many things going on with my body all so fast, that

I am kind of scared. I can't even tell you when the symptoms began

neurologically, but physically it all just started for me on

December 6th. I woke up and the right side of my face was paralyzed.

I have high blood pressure, so I immediately thought the worst. They

told me I had Bell's Palsy, but 2 weeks in to it, the left side did

the same thing ( so now my whole face was). Then 3 weeks into that,

it went back to the right side, where it currently is at. The

doctor's told me right away it wasn't Bells. They had suspected NS.

Had the biopsy 2 weeks ago, and confirmed. Now it just seems things

are just getting so much worse so fast!

In Neurosarcoidosis , tracie feldhaus

wrote:

>

> , what's going on? how can we help?

>

> sincerely,

> Tracie

> NS Co-owner/moderator

> --- christina wrote:

>

> > I would like to talk to someone about my symptoms

> > and what I am going

> > through. I am kindof confused and scared about what

> > it is that's going

> > on. Thank you.

> >

> >

>

[Guest guest]

---Thank you so much Tracie for getting back to me so soon. I have

just been recently diagnosed, about 3 weeks ago, and there just

seems to be sooo many things going on with my body all so fast, that

I am kind of scared. I can't even tell you when the symptoms began

neurologically, but physically it all just started for me on

December 6th. I woke up and the right side of my face was paralyzed.

I have high blood pressure, so I immediately thought the worst. They

told me I had Bell's Palsy, but 2 weeks in to it, the left side did

the same thing ( so now my whole face was). Then 3 weeks into that,

it went back to the right side, where it currently is at. The

doctor's told me right away it wasn't Bells. They had suspected NS.

Had the biopsy 2 weeks ago, and confirmed. Now it just seems things

are just getting so much worse so fast!

In Neurosarcoidosis , tracie feldhaus

wrote:

>

> , what's going on? how can we help?

>

> sincerely,

> Tracie

> NS Co-owner/moderator

> --- christina wrote:

>

> > I would like to talk to someone about my symptoms

> > and what I am going

> > through. I am kindof confused and scared about what

> > it is that's going

> > on. Thank you.

> >

> >

>

[Guest guest]

>

> > I would like to talk to someone about my symptoms

> > and what I am going

> > through. I am kindof confused and scared about what

> > it is that's going

> > on. Thank you.

> >

> >

>

[Guest guest]

>

> > I would like to talk to someone about my symptoms

> > and what I am going

> > through. I am kindof confused and scared about what

> > it is that's going

> > on. Thank you.

> >

> >

>

[Guest guest]

, NS is a generally a long slow

progression,and there are medications that can help

slow that progression.

Many of us have had sarcoidosis for many years-- I'm

hitting 18 yrs the end of March-- it started as

pulmonary sarcoidosis and iritis-- inflammation of the

iris of both eyes. I did a couple of years on high

dose steroids-- and we put it into remission for 5

years.

I ended up in a job that was extrememly stressful,

extremely demanding and required that I work 45 plus

hours each week. We were monitored on our calls, with

the constant threat that if we did anything wrong-- we

would be unemployed faster than lighting.

When you have any kind of auto-immune disease, this

kind of enviroment is so very hard on the immune

system, that mine decided to go back into active sarc.

Once again, it was the lungs that got screwed up, and

I found myself on oxygen 24/7. My eyes also became

inflammed, and the arthritis, the bone and joint and

ligament pain went thru the roof. So I knew I was in

trouble.

My pulmonologist (not the original one) insisted I go

back on high dose prednisone, and for me-- what little

inflammation it took out of my body was offset by the

leaching of the minerals in my bones- which made my

sarcoid-induced arthritis so much worse.

Fortunately, I had worked for a medical group, and one

of the MD's that we'd hired had done her Masters

Thesis on sarc. So I begged her to take me on as a

patient. She knew she was behind the time on sarc,

and was and is bright enough to send me to Sacramento

to a Rheumatologist that really knows auto=immune

disease. He has been paramount in getting me the meds

I needed.

To find the combination that will work for you is not

a fast process. You will probably be treated with

prednisone, or hopefully they'll get you on

Methotrexate and spare the steroid-effects. We know

now that when you've been on steroids, and then come

off them-- that this is the population that seems to

have progressive- chronic sarcoidosis. This makes me

think that the steroids only mask the problem.

We do produce too much TNF-B (tumor necrosing factor

and this is a protein in our immune system that

should be clearing out white cells when they've

finished doing their job. White cells are the

infection fighters, followed by TNF-a to clear them

away, then TNF-b to clear out the tnf-a. However, our

immune system doesn't clear out these cells, it just

builds upon them-- forming clusters of granulomas

tumors.

So what we need is immunosupressants that slow down

the TNF-b. Many of our members have responded well to

Methotrexate, Plaquenil, Imuran, Arava, Prednisone,

various DMARDS (Disease Modifying Anti-Rheumatic

Drugs) and Biologicals (BRMS-- Biological Response

Modifiers.) These are Enbrel, Humira, Remicade and

there is a new one that I'm not familiar with.

It is a process where you start one medication as low

on the totem pole as possible, and if it doesn't work,

or you need to add another to handle other symptoms--

then you add one thing at a time. Otherwise, if you

have side effects, you'll not know what is causing the

problem.

I think the most important thing is to pace yourself,

listen to your body-- if you are tired--rest. If you

have to work-- file for FMLA (Family Medical Leave

Act) so that your job can't be jeopardized if you have

to do multiple MD appts, or have days that you are

just too wiped out to work all day.

Anyhow, I'm going off on tangents tonight, I

apologize-- but if you can specifiy your symptoms-- we

can get more specific with our answers.

Sincerely,

Tracie

NS Co-owner/moderator

--- christina wrote:

> ---Thank you so much Tracie for getting back to me

> so soon. I have

> just been recently diagnosed, about 3 weeks ago, and

> there just

> seems to be sooo many things going on with my body

> all so fast, that

> I am kind of scared. I can't even tell you when the

> symptoms began

> neurologically, but physically it all just started

> for me on

> December 6th. I woke up and the right side of my

> face was paralyzed.

> I have high blood pressure, so I immediately thought

> the worst. They

> told me I had Bell's Palsy, but 2 weeks in to it,

> the left side did

> the same thing ( so now my whole face was). Then 3

> weeks into that,

> it went back to the right side, where it currently

> is at. The

> doctor's told me right away it wasn't Bells. They

> had suspected NS.

> Had the biopsy 2 weeks ago, and confirmed. Now it

> just seems things

> are just getting so much worse so fast!

>

>

> In Neurosarcoidosis , tracie

> feldhaus

> wrote:

> >

> > , what's going on? how can we help?

> >

> > sincerely,

> > Tracie

> > NS Co-owner/moderator

> > --- christina wrote:

> >

> > > I would like to talk to someone about my

> symptoms

> > > and what I am going

> > > through. I am kindof confused and scared about

> what

> > > it is that's going

> > > on. Thank you.

> > >

> > >

> >

>

>

>

[Guest guest]

, NS is a generally a long slow

progression,and there are medications that can help

slow that progression.

Many of us have had sarcoidosis for many years-- I'm

hitting 18 yrs the end of March-- it started as

pulmonary sarcoidosis and iritis-- inflammation of the

iris of both eyes. I did a couple of years on high

dose steroids-- and we put it into remission for 5

years.

I ended up in a job that was extrememly stressful,

extremely demanding and required that I work 45 plus

hours each week. We were monitored on our calls, with

the constant threat that if we did anything wrong-- we

would be unemployed faster than lighting.

When you have any kind of auto-immune disease, this

kind of enviroment is so very hard on the immune

system, that mine decided to go back into active sarc.

Once again, it was the lungs that got screwed up, and

I found myself on oxygen 24/7. My eyes also became

inflammed, and the arthritis, the bone and joint and

ligament pain went thru the roof. So I knew I was in

trouble.

My pulmonologist (not the original one) insisted I go

back on high dose prednisone, and for me-- what little

inflammation it took out of my body was offset by the

leaching of the minerals in my bones- which made my

sarcoid-induced arthritis so much worse.

Fortunately, I had worked for a medical group, and one

of the MD's that we'd hired had done her Masters

Thesis on sarc. So I begged her to take me on as a

patient. She knew she was behind the time on sarc,

and was and is bright enough to send me to Sacramento

to a Rheumatologist that really knows auto=immune

disease. He has been paramount in getting me the meds

I needed.

To find the combination that will work for you is not

a fast process. You will probably be treated with

prednisone, or hopefully they'll get you on

Methotrexate and spare the steroid-effects. We know

now that when you've been on steroids, and then come

off them-- that this is the population that seems to

have progressive- chronic sarcoidosis. This makes me

think that the steroids only mask the problem.

We do produce too much TNF-B (tumor necrosing factor

and this is a protein in our immune system that

should be clearing out white cells when they've

finished doing their job. White cells are the

infection fighters, followed by TNF-a to clear them

away, then TNF-b to clear out the tnf-a. However, our

immune system doesn't clear out these cells, it just

builds upon them-- forming clusters of granulomas

tumors.

So what we need is immunosupressants that slow down

the TNF-b. Many of our members have responded well to

Methotrexate, Plaquenil, Imuran, Arava, Prednisone,

various DMARDS (Disease Modifying Anti-Rheumatic

Drugs) and Biologicals (BRMS-- Biological Response

Modifiers.) These are Enbrel, Humira, Remicade and

there is a new one that I'm not familiar with.

It is a process where you start one medication as low

on the totem pole as possible, and if it doesn't work,

or you need to add another to handle other symptoms--

then you add one thing at a time. Otherwise, if you

have side effects, you'll not know what is causing the

problem.

I think the most important thing is to pace yourself,

listen to your body-- if you are tired--rest. If you

have to work-- file for FMLA (Family Medical Leave

Act) so that your job can't be jeopardized if you have

to do multiple MD appts, or have days that you are

just too wiped out to work all day.

Anyhow, I'm going off on tangents tonight, I

apologize-- but if you can specifiy your symptoms-- we

can get more specific with our answers.

Sincerely,

Tracie

NS Co-owner/moderator

--- christina wrote:

> ---Thank you so much Tracie for getting back to me

> so soon. I have

> just been recently diagnosed, about 3 weeks ago, and

> there just

> seems to be sooo many things going on with my body

> all so fast, that

> I am kind of scared. I can't even tell you when the

> symptoms began

> neurologically, but physically it all just started

> for me on

> December 6th. I woke up and the right side of my

> face was paralyzed.

> I have high blood pressure, so I immediately thought

> the worst. They

> told me I had Bell's Palsy, but 2 weeks in to it,

> the left side did

> the same thing ( so now my whole face was). Then 3

> weeks into that,

> it went back to the right side, where it currently

> is at. The

> doctor's told me right away it wasn't Bells. They

> had suspected NS.

> Had the biopsy 2 weeks ago, and confirmed. Now it

> just seems things

> are just getting so much worse so fast!

>

>

> In Neurosarcoidosis , tracie

> feldhaus

> wrote:

> >

> > , what's going on? how can we help?

> >

> > sincerely,

> > Tracie

> > NS Co-owner/moderator

> > --- christina wrote:

> >

> > > I would like to talk to someone about my

> symptoms

> > > and what I am going

> > > through. I am kindof confused and scared about

> what

> > > it is that's going

> > > on. Thank you.

> > >

> > >

> >

>

>

>

[Guest guest]

You can talk to me anytime. karla

>

> I would like to talk to someone about my symptoms and what I am going

> through. I am kindof confused and scared about what it is that's

going

> on. Thank you.

>

[Guest guest]

You can talk to me anytime. karla

>

> I would like to talk to someone about my symptoms and what I am going

> through. I am kindof confused and scared about what it is that's

going

> on. Thank you.

>

[Guest guest]

We have all been where you are now, trust me. Just say what is on your

mind. We will not judge you. We have all been that scared, where

everything has been happening so fast that you can not comprehend it.

Just let us walk with you through it. We are glad to help. It IS scary

out there by yourself. karla

>

> I would like to talk to someone about my symptoms and what I am going

> through. I am kindof confused and scared about what it is that's

going

> on. Thank you.

>

[Guest guest]

We have all been where you are now, trust me. Just say what is on your

mind. We will not judge you. We have all been that scared, where

everything has been happening so fast that you can not comprehend it.

Just let us walk with you through it. We are glad to help. It IS scary

out there by yourself. karla

>

> I would like to talk to someone about my symptoms and what I am going

> through. I am kindof confused and scared about what it is that's

going

> on. Thank you.

>

[Guest guest]

,

What did they biopsy? This was the first thing that happened to me (10

years ago) but noone ever biopsied anything. I have a presumed case of

NS and am searching for something to biopsy to get a final dx.

I am sorry you have the disease but know we are all here for you.

Terri G.

> >

> > > I would like to talk to someone about my symptoms

> > > and what I am going

> > > through. I am kindof confused and scared about what

> > > it is that's going

> > > on. Thank you.

> > >

> > >

> >

>

[Guest guest]

,

What did they biopsy? This was the first thing that happened to me (10

years ago) but noone ever biopsied anything. I have a presumed case of

NS and am searching for something to biopsy to get a final dx.

I am sorry you have the disease but know we are all here for you.

Terri G.

> >

> > > I would like to talk to someone about my symptoms

> > > and what I am going

> > > through. I am kindof confused and scared about what

> > > it is that's going

> > > on. Thank you.

> > >

> > >

> >

>

[Guest guest]

Terri, Thank you for writing back. They did a biopsy of my lip. It was my bottom lip, right on the inside of it. They said that that is where all of your salivary glands come together. Yeah, I am kindof scared because so many things are happening so fast. People I talk to say that this is a slowly progressing disease, but things are happening to me in a short period of time. I live in such a small town, that my neurologist (the only one in town), has never seen a case of this before. So, he is kind of unsure what to even do. Did you have the facial palsy more than once, too? Mine is still flared up on the right side, again...and seems to not want to go away. I'll talk with you again soon, I have to get ready for my son to come home from school in 20 minutes. Thank you again for writing to me. I hope to hear back from you. Christymosaicgirl1 wrote: ,What did they biopsy? This was the first thing that happened to me (10years ago) but noone ever biopsied anything. I have a presumed case ofNS and am searching for something to biopsy to get a final dx.I am sorry you have the disease but know we are all here for you.Terri G.> >> > > I would like to talk to someone about my symptoms> > > and what I am going> > > through. I am kindof confused and scared about what> > > it is that's going> > > on. Thank you.> > >> > >> >>

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[Guest guest]

Terri, Thank you for writing back. They did a biopsy of my lip. It was my bottom lip, right on the inside of it. They said that that is where all of your salivary glands come together. Yeah, I am kindof scared because so many things are happening so fast. People I talk to say that this is a slowly progressing disease, but things are happening to me in a short period of time. I live in such a small town, that my neurologist (the only one in town), has never seen a case of this before. So, he is kind of unsure what to even do. Did you have the facial palsy more than once, too? Mine is still flared up on the right side, again...and seems to not want to go away. I'll talk with you again soon, I have to get ready for my son to come home from school in 20 minutes. Thank you again for writing to me. I hope to hear back from you. Christymosaicgirl1 wrote: ,What did they biopsy? This was the first thing that happened to me (10years ago) but noone ever biopsied anything. I have a presumed case ofNS and am searching for something to biopsy to get a final dx.I am sorry you have the disease but know we are all here for you.Terri G.> >> > > I would like to talk to someone about my symptoms> > > and what I am going> > > through. I am kindof confused and scared about what> > > it is that's going> > > on. Thank you.> > >> > >> >>

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Tracie, Wow, I'm so sorry to hear about what a long road you have been down with this disease. 18 years, wow. Well, I'll just let you know what I am experiencing. Like I said before, facial palsy for the 3rd time (still have it on the right side), bad blurry vision in my right eye, very bad headaches daily, arthritis that has just set in in the last couple of weeks, muscle cramps in my lower legs so bad that I have a hard time extending my feet (can't go up or down stairs), if I happen to squat down to do something, I need assistance getting up, I have a strange rash on my hands and arms, but only the under parts of my arms. But, it's a red rash and on my arms its only red circles everywhere. It's not a topical rash, either...it's under the skin. It doesn't hurt or itch, it's just there. My memory has gotten to be awful, can't remember anything. I have been on Prednisone for 3 months, just got off 3 weeks ago. But, that is the only

medication I have been on so far. My neurologist has never seen a NS patient before, so he pretty much isn't sure what to do I think. I will write more later, my son will be getting home from school in a few minutes. Thank you again for writing back to me....now I don't feel all alone. Christytracie feldhaus wrote: , NS is a generally a long slowprogression,and there are medications that can helpslow that progression. Many of us have had sarcoidosis for

many years-- I'mhitting 18 yrs the end of March-- it started aspulmonary sarcoidosis and iritis-- inflammation of theiris of both eyes. I did a couple of years on highdose steroids-- and we put it into remission for 5years. I ended up in a job that was extrememly stressful,extremely demanding and required that I work 45 plushours each week. We were monitored on our calls, withthe constant threat that if we did anything wrong-- wewould be unemployed faster than lighting. When you have any kind of auto-immune disease, thiskind of enviroment is so very hard on the immunesystem, that mine decided to go back into active sarc.Once again, it was the lungs that got screwed up, andI found myself on oxygen 24/7. My eyes also becameinflammed, and the arthritis, the bone and joint andligament pain went thru the roof. So I knew I was introuble.My pulmonologist (not the original one) insisted I

goback on high dose prednisone, and for me-- what littleinflammation it took out of my body was offset by theleaching of the minerals in my bones- which made mysarcoid-induced arthritis so much worse. Fortunately, I had worked for a medical group, and oneof the MD's that we'd hired had done her MastersThesis on sarc. So I begged her to take me on as apatient. She knew she was behind the time on sarc,and was and is bright enough to send me to Sacramentoto a Rheumatologist that really knows auto=immunedisease. He has been paramount in getting me the medsI needed.To find the combination that will work for you is nota fast process. You will probably be treated withprednisone, or hopefully they'll get you onMethotrexate and spare the steroid-effects. We knownow that when you've been on steroids, and then comeoff them-- that this is the population that seems tohave progressive- chronic

sarcoidosis. This makes methink that the steroids only mask the problem.We do produce too much TNF-B (tumor necrosing factorb) and this is a protein in our immune system thatshould be clearing out white cells when they'vefinished doing their job. White cells are theinfection fighters, followed by TNF-a to clear themaway, then TNF-b to clear out the tnf-a. However, ourimmune system doesn't clear out these cells, it justbuilds upon them-- forming clusters of granulomastumors. So what we need is immunosupressants that slow downthe TNF-b. Many of our members have responded well toMethotrexate, Plaquenil, Imuran, Arava, Prednisone,various DMARDS (Disease Modifying Anti-RheumaticDrugs) and Biologicals (BRMS-- Biological ResponseModifiers.) These are Enbrel, Humira, Remicade andthere is a new one that I'm not familiar with. It is a process where you start one medication as lowon the totem pole

as possible, and if it doesn't work,or you need to add another to handle other symptoms--then you add one thing at a time. Otherwise, if youhave side effects, you'll not know what is causing theproblem.I think the most important thing is to pace yourself,listen to your body-- if you are tired--rest. If youhave to work-- file for FMLA (Family Medical LeaveAct) so that your job can't be jeopardized if you haveto do multiple MD appts, or have days that you arejust too wiped out to work all day. Anyhow, I'm going off on tangents tonight, Iapologize-- but if you can specifiy your symptoms-- wecan get more specific with our answers.Sincerely,TracieNS Co-owner/moderator --- christina <paulsgirl75 (AT) yahoo (DOT) com> wrote:> ---Thank you so much Tracie for getting back to me> so soon. I have > just been recently diagnosed,

about 3 weeks ago, and> there just > seems to be sooo many things going on with my body> all so fast, that > I am kind of scared. I can't even tell you when the> symptoms began > neurologically, but physically it all just started> for me on > December 6th. I woke up and the right side of my> face was paralyzed. > I have high blood pressure, so I immediately thought> the worst. They > told me I had Bell's Palsy, but 2 weeks in to it,> the left side did > the same thing ( so now my whole face was). Then 3> weeks into that, > it went back to the right side, where it currently> is at. The > doctor's told me right away it wasn't Bells. They> had suspected NS. > Had the biopsy 2 weeks ago, and confirmed. Now it> just seems things > are just getting so much worse so fast!> > > In Neurosarcoidosis , tracie> feldhaus > wrote:> >> > , what's going on? how can we help?> > > > sincerely,> > Tracie> > NS Co-owner/moderator> > --- christina wrote:> > > > > I would like to talk to someone about my> symptoms> > > and what I am going > > > through. I am kindof confused and scared about> what> > > it is that's going > > > on. Thank you.> > > > > >> >> > >

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