Re: Hello I'm new to this board.

[Guest guest]

,

My name is Ron and I am truly sorry to hear of your brother's

situation. I too have neurosarcoidosis. I was diagnosed in 1995. I

no longer work and have been on disability for the last 5 years.

Neurosarcoidosis (NS) is a very difficult disease to diagnosed and

treat. Diagnosis is only confirmed by a tissue biopsy, and treatment

can vary. Some people respond to certain treatments and go into

remission while others will not. There is no one cure for all with

this disease.

Yes, it can spread throughout the body and it can also remain

localized. No one knows what dictate the course and progression of

this illness. We just know that it is dreadful and very debilitating.

I would like to suggest that your brother see someone with experience

and knowledge. Do a little research and find out who knows something

about this disease in your immediate area and then schedule an

appointment if you have not done so.

The list of doctors could be from a Pulmonolgist (lung doctor), to a

neurologist (nerve doctor) to a Rheumatologist or even a immunologist

or cardiologist, it depends on where the sarc is localized. So do a

little home work and it will pay dividends in the long run. It will

keep your brother from wasting time with the wrong physician who may

be clueless on how to approach treatment.

Also, feel free to click on the " Link " section in the left hand

margin. There you will find articles that will provide you with more

information about this disease.If you have any specific or general

questions please do not hesitate to ask.

Welcome to the website my friend. I wish we could have met under more

pleasant circumstance.

Blessings and healings to your brother.

>

> Hello My name is and I have brother who has neurosarcoidosis

> and hope I'm still welcome on this board. I've been trying to learn

as

> much as I can about this and yet find really not alot. My brother

was

> diagnosed with this about a year ago..he was in the hospital for

about

> a month and they ran every test under the sun..and to be diagnosed

in

> end with neurosarcoidosis..my brother was the picture of health

till

> this...now he isn't doing well,can't work,or anything...from what I

> know and understand is that it's spread everywhere lungs,brain and

> throughtout body..when they'd done exrays his body was all white

> spots..which my mother explains to me is the inflamation..he's been

in

> and out in past month in the hospital and not doing well...they

tried

> to take him off prednisone..but got bad and is back on...he's

gained

> so much weight from this..I know I'm rambling but I really don't

know

> what to ask or say. But hoping to find some help/support from

someone

> who understands this.

>

>

>

[Guest guest]

--- emersyn_mom@...> wrote:

> Hello My name is and I have brother who has

> neurosarcoidosis

> and hope I'm still welcome on this board. I've been

> trying to learn as

> much as I can about this and yet find really not

> alot. My brother was

> diagnosed with this about a year ago..he was in the

> hospital for about

> a month and they ran every test under the sun..and

> to be diagnosed in

> end with neurosarcoidosis..my brother was the

> picture of health till

> this...now he isn't doing well,can't work,or

> anything...from what I

> know and understand is that it's spread everywhere

> lungs,brain and

> throughtout body..when they'd done exrays his body

> was all white

> spots..which my mother explains to me is the

> inflamation..he's been in

> and out in past month in the hospital and not doing

> well...they tried

> to take him off prednisone..but got bad and is back

> on...he's gained

> so much weight from this..I know I'm rambling but I

> really don't know

> what to ask or say. But hoping to find some

> help/support from someone

> who understands this.

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hello I'm new to this board.

Hello My name is and I have brother who has neurosarcoidosis and hope I'm still welcome on this board. Hi and welcome to

the family----we are sorry you had to find us because of this terrible disease

but glad that you DID find us. Your brother's story sounds a lot like most

of us!

I've been trying to learn as much as I can about this and yet find really not alot.

There is a LOT of good info in our archives and there are many people here

that are willing and able to help you with questions.......we have nearly 400

members and most are willing to answer your questions. The only thing I

would caution you about is to give us time----we are all sick with this

disease and may not be able to answer for a day or two........so do not feel

like we are ignoring your questions if they are not answered immediately.

Please feel free to ask!

My brother was diagnosed with this about a year ago..he was in the hospital for about a month and they ran every test under the sun..and to be diagnosed in end with neurosarcoidosis..my brother was the picture of health till this...now he isn't doing well,can't work,or anything. Believe it or not, your

brother was very lucky to be diagnosed so quickly! It took my Doctors (many of them) nearly 3 years to diagnose and some of us have gone for many years before

diagnosed.........at least you all know what he is dealing with now and can find help.

...from what I know and understand is that it's spread everywhere lungs,brain and throughtout body..when they'd done exrays his body was all white spots..which my mother explains to me is the inflamation. Yes, unfortunately, it

spreads everywhere! It makes our immune system overactive and then it just

goes haywire.

they tried to take him off prednisone..but got bad and is back on...he's gained so much weight from this

,there are other drugs besides prednisone........it seems to be the first thing the Doctors think of but it is such a powerful drug and has so many bad side effects. I started on it too and I began swelling up the FIRST DAY! It made me very, very, sick and I could not keep food down. HOWEVER, I gained 60 pounds in two months and my Doctor kept saying -- "you will have to cut back on your eating" !

When I told him I could not eat hardly anything, he did not believe me! But there

are many other drugs your brother can try......ask his Doctor! There are many

notes in the archives about the different drugs.........right now, I have just started Remicade treatments and I have been on Imuran for about the last two years.

Please check the archives for all the different choices. As for seeing this in the media, it is getting better! We do see a few items now and then and I think they

are beginning to realize that this is not a "rare" disease as they once thought!

Thanks for posting........it is great that your brother has someone who cares and

wants to help him! With this disease, some of us (most of us) do not LOOK sick and so many family members and others do not believe how sick we are! Also, this

disease causes a chronic fatigue that I cannot even begin to describe!!! And most

of us fight severe depression.

Ask those questions!!! We DO care.........I am a Co-Owner and the other

Co-Owner is Tracie. We also have the following Moderators, so there are many to help--- Rose, Debbie, and Kim. Right now, Tracie is off for a few days as she just got a Remicade Infusion and Kim is really sick right now........but Rose, Debbie, and myself are here.

Hugs and well wishes,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Hi Ron, I want to thank you for replying...I hadn't checked back on my puter last night and just woke to find some posts..thanks to all in advance. My story regarding my brother is abit long..he lives in Washington now..but lived near me a couple years a go here in the east coast..well he was showing really no symptoms..but later my mom told me he'd have times where he'd just collapse..but never went in to have it checked....then one night he collapsed again and his wife called 911 and he was admitted and didn't leave hospital for a month..I haven't seen my brother for about 2 years and my mother yesterday sent me a recent photo of him and I honestly didn't recognize my own brother..only reason I did...was how he was posing...so I've been frantically trying to learn about this disease. I will see if he is seeing a pulmonary doc, and the other...from what I understand is that there really are no cures but only

treatments for symptoms?? I also know at this time the treatments are not helping my brother...I guess they have done a recent scan and my moms told me that his spots (inflamation) is only getting worse..can anyone tell me..I live in WV....and am close to DC/VA/MD....I know this area has good hospitals..... Hopkins/NIH...to name a couple....I was wondering if anyone knows of some that are doing experimental treatments? Thanks so much again Ron. Blessings, " J. Blanchett" wrote: ,My name is Ron and I am truly sorry to hear of your brother's situation. I too have neurosarcoidosis. I was diagnosed in 1995. I no longer work and have been on disability for the last 5 years.Neurosarcoidosis (NS)

is a very difficult disease to diagnosed and treat. Diagnosis is only confirmed by a tissue biopsy, and treatment can vary. Some people respond to certain treatments and go into remission while others will not. There is no one cure for all with this disease.Yes, it can spread throughout the body and it can also remain localized. No one knows what dictate the course and progression of this illness. We just know that it is dreadful and very debilitating.I would like to suggest that your brother see someone with experience and knowledge. Do a little research and find out who knows something about this disease in your immediate area and then schedule an appointment if you have not done so.The list of doctors could be from a Pulmonolgist (lung doctor), to a neurologist (nerve doctor) to a Rheumatologist or even a immunologist or cardiologist, it depends on where the sarc is

localized. So do a little home work and it will pay dividends in the long run. It will keep your brother from wasting time with the wrong physician who may be clueless on how to approach treatment.Also, feel free to click on the "Link" section in the left hand margin. There you will find articles that will provide you with more information about this disease.If you have any specific or general questions please do not hesitate to ask. Welcome to the website my friend. I wish we could have met under more pleasant circumstance.Blessings and healings to your brother. >> Hello My name is and I have brother who has neurosarcoidosis > and hope I'm still welcome on this board. I've been trying to learn as> much as I can about this and yet find really not alot. My

brother was > diagnosed with this about a year ago..he was in the hospital for about > a month and they ran every test under the sun..and to be diagnosed in > end with neurosarcoidosis..my brother was the picture of health till > this...now he isn't doing well,can't work,or anything...from what I > know and understand is that it's spread everywhere lungs,brain and > throughtout body..when they'd done exrays his body was all white > spots..which my mother explains to me is the inflamation..he's been in > and out in past month in the hospital and not doing well...they tried > to take him off prednisone..but got bad and is back on...he's gained > so much weight from this..I know I'm rambling but I really don't know > what to ask or say. But hoping to find some help/support from someone > who understands this.> >

>

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice.

[Guest guest]

Hello Darlene, I'm so happy when I started trying to find anything on net about this disease..I found you all...when I read the front of your site..saying for those with the disease..I really thought I wouldn't be welcomed..and quite the opposite..I read your post and I don't feel so helpless/hopeless right now....I've asked my mother if my brother has contacted any hospital that will try different things..like the Hopkins and so forth...and she tells me....that they're are very few places that really know anything...I want to say but could be wrong..when my brother Jim was diagnosed......there was a doctor like in South Carolina that they'd talked too.( physicians) cause they didn't really know what or how to treat my brother at the time in hospital? So I don't know if this is the case...I just would like to see my brother get the best treatment as he can... You were saying on being very tired..yes I know that he is

terribly....he's yawning all the time..and depression without a doubt..my brother was a very very active person and very health consciencious...and he isn't able to work. I would love to be able to get my brother to join your group and I will see if he will.. I hope he will because I feel you all seem very kind and you have the understanding and I know can give him the support he needs.. My mother in past month also was hospitalized and has COPD and Emhpazema (spelt wrong...sorry) and is now home on oxgyen 85 percent of day...and my brother going through this...I feel so lost having my family with these diseases and honestly am afraid..they are my only 2 surviving family members.. Thanks so much Darlene, Thinking of you and your loved ones, Darlene Arney wrote: Hello I'm new to this board. Hello My name is and I have brother who has neurosarcoidosis and hope I'm still welcome on this

board. Hi and welcome to the family----we are sorry you had to find us because of this terrible disease but glad that you DID find us. Your brother's story sounds a lot like most of us! I've been trying to learn as much as I can about this and yet find really not alot. There is a LOT of good info in our archives and there are many people here that are willing and able to help you with questions.......we have nearly 400 members and most are willing to answer your questions. The only thing I would caution you about is to give us time----we are all sick with this disease and may

not be able to answer for a day or two........so do not feel like we are ignoring your questions if they are not answered immediately. Please feel free to ask! My brother was diagnosed with this about a year ago..he was in the hospital for about a month and they ran every test under the sun..and to be diagnosed in end with neurosarcoidosis..my brother was the picture of health till this...now he isn't doing well,can't work,or anything. Believe it or not, your brother was very lucky to be diagnosed so quickly! It took my Doctors (many of them) nearly 3 years to diagnose and some of us have gone for many years before diagnosed.........at least you all know what he is dealing with now and can find help. ..from what I know and understand is

that it's spread everywhere lungs,brain and throughtout body..when they'd done exrays his body was all white spots..which my mother explains to me is the inflamation. Yes, unfortunately, it spreads everywhere! It makes our immune system overactive and then it just goes haywire. they tried to take him off prednisone..but got bad and is back on...he's gained so much weight from this ,there are other drugs besides prednisone........it seems to be the first thing the Doctors think of but it is such a powerful drug and has so many bad side effects. I started on it too and I began swelling up the FIRST DAY! It made me very, very, sick and I could not keep food down. HOWEVER, I gained 60 pounds in two months and my Doctor kept saying -- "you

will have to cut back on your eating" ! When I told him I could not eat hardly anything, he did not believe me! But there are many other drugs your brother can try......ask his Doctor! There are many notes in the archives about the different drugs.........right now, I have just started Remicade treatments and I have been on Imuran for about the last two years. Please check the archives for all the different choices. As for seeing this in the media, it is getting better! We do see a few items now and then and I think they are beginning to realize that this is not a "rare" disease as they once thought! Thanks for posting........it is great that your brother has someone who

cares and wants to help him! With this disease, some of us (most of us) do not LOOK sick and so many family members and others do not believe how sick we are! Also, this disease causes a chronic fatigue that I cannot even begin to describe!!! And most of us fight severe depression. Ask those questions!!! We DO care.........I am a Co-Owner and the other Co-Owner is Tracie. We also have the following Moderators, so there are many to help--- Rose, Debbie, and Kim. Right now, Tracie is off for a few days as she just got a Remicade Infusion

and Kim is really sick right now........but Rose, Debbie, and myself are here. Hugs and well wishes, Darlene NS Co-Owner/Moderator

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

Welcome Dennis,

you are welcome..and hope that we can give you the support your looking for . And your brother as well.

I personally was on prednisone for 5yrs and became toxic and had to be removed. Than started on Imuran, plaquneil. The Steriods were not doing anything anyway.

and yes i understand the weight gain.but the Good news after stopping the Prednisone i lost just about 150lbs.

you take care of you and your brother ..

blessings and hugs and a pain free day

in Pa

[Guest guest]

Hi H, Welcome to the group. I have very glad you have found us. It sounds like you and your family need a lot of support right now, all going through such a difficult time. You have found a great group here for your brother. There is a wealth of information here and in the archives . Also, you can ask questions and vent frustrations and everyone here will listen and be able to help. I hope things are going well for your mother as well. Again welcome to the group. Debbie wrote: Hello Darlene, I'm so happy when I started trying to find anything on net about this disease..I found you all...when I read

the front of your site..saying for those with the disease..I really thought I wouldn't be welcomed..and quite the opposite..I read your post and I don't feel so helpless/hopeless right now....I've asked my mother if my brother has contacted any hospital that will try different things..like the Hopkins and so forth...and she tells me....that they're are very few places that really know anything...I want to say but could be wrong..when my brother Jim was diagnosed......there was a doctor like in South Carolina that they'd talked too.( physicians) cause they didn't really know what or how to treat my brother at the time in hospital? So I don't know if this is the case...I just would like to see my brother get the best treatment as he can... You were saying on being very tired..yes I know that he is terribly....he's yawning all the time..and depression without a doubt..my brother was a very very active person and very health consciencious...and he isn't able to

work. I would love to be able to get my brother to join your group and I will see if he will.. I hope he will because I feel you all seem very kind and you have the understanding and I know can give him the support he needs.. My mother in past month also was hospitalized and has COPD and Emhpazema (spelt wrong...sorry) and is now home on oxgyen 85 percent of day...and my brother going through this...I feel so lost having my family with these diseases and honestly am afraid..they are my only 2 surviving family members.. Thanks so much Darlene, Thinking of you and your loved ones, Darlene Arney wrote: Hello I'm new to this board. Hello My name is and I have brother who has neurosarcoidosis and hope I'm still welcome on this board. Hi and welcome to the family----we are sorry you had to find us because of this terrible disease but glad that you DID find us. Your brother's story sounds a lot like most of us! I've been trying to learn as much as I can about this and yet find really not alot. There is a LOT of good info in our archives and there are many people here that are willing and able to help you with questions.......we have nearly 400 members and most are willing to answer your questions. The only thing I would caution you about is to give us time----we are all sick with this disease and may not be able to answer for a day or two........so do not feel like we are ignoring your questions if they are not answered immediately. Please feel free to ask! My brother was diagnosed with this about a year ago..he was in the hospital for about a month and they ran every test under the sun..and to be diagnosed in end with neurosarcoidosis..my brother was the picture of health till this...now he isn't doing well,can't work,or anything. Believe it or not, your brother was very lucky to be diagnosed so quickly! It took my Doctors (many of them) nearly 3 years to diagnose and some of us have gone for many years before diagnosed.........at least you all know what he is dealing with now and can find help. ..from what I know and understand is that it's spread everywhere lungs,brain and throughtout body..when they'd done exrays his body was all white spots..which my mother explains to me is the

inflamation. Yes, unfortunately, it spreads everywhere! It makes our immune system overactive and then it just goes haywire. they tried to take him off prednisone..but got bad and is back on...he's gained so much weight from this ,there are other drugs besides prednisone........it seems to be the first thing the Doctors think of but it is such a powerful drug and has so many bad side effects. I started on it too and I began swelling up the FIRST DAY! It made me very, very, sick and I could not keep food down. HOWEVER, I gained 60 pounds in two months and my Doctor kept saying -- "you will have to cut back on your eating" ! When I told him I could not eat hardly anything, he did not believe

me! But there are many other drugs your brother can try......ask his Doctor! There are many notes in the archives about the different drugs.........right now, I have just started Remicade treatments and I have been on Imuran for about the last two years. Please check the archives for all the different choices. As for seeing this in the media, it is getting better! We do see a few items now and then and I think they are beginning to realize that this is not a "rare" disease as they once thought! Thanks for posting........it is great that your brother has someone who cares and wants to help him! With this disease, some of us (most of us) do not LOOK sick

and so many family members and others do not believe how sick we are! Also, this disease causes a chronic fatigue that I cannot even begin to describe!!! And most of us fight severe depression. Ask those questions!!! We DO care.........I am a Co-Owner and the other Co-Owner is Tracie. We also have the following Moderators, so there are many to help--- Rose, Debbie, and Kim. Right now, Tracie is off for a few days as she just got a Remicade Infusion and Kim is really sick right now........but Rose, Debbie, and myself are here. Hugs and well wishes, Darlene NS Co-Owner/Moderator Blab-away for as little as 1�/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

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[Guest guest]

Hi, . I'm a little behind on my email, so I know that you have

gotten some good info from other members. I want to also welcome

you. We have many friends & family members on this list. I'm

pleased to see a sister caring so much for her brother & reaching out

on his behalf. This group is also a place where you can rant, vent,

cuss, cry, anything that you need to do. You don't have to apologize

or feel ashamed of anything you feel or say.

I would just like to add that it is critical to have a medical team

that is knowledgeable and up-to-date on neurosarc & the treatment

options. I'm an RN and I can tell you that most doctors know zip

about sarcoidosis, let alone the serious complications that can

occur. This includes neurologists. I was very fortunate to get a

pretty good one on the first try. He recognized the pattern of

symptoms, history of sarc on lymph node biopsy & quickly put it

together. BUT, I didn't get treated for another year because all the

tests were supposedly normal! At least he is teachable; he respects

my opinions & is open to information I bring him. I've seen two out-

of-state specialists on my own, with my own money, and my local neuro

has gone along with their recommendations. He even told me about

attending a conference in California and one of the speakers was the

first NS specialist I had seen, so he was impressed.

I think someone suggested that you go to the Links section; there is

excellent information there. Here are a few very good resources:

http://emall.nhlbihin.net/product2.asp?sku=5060

You can download info; order booklets (one is free)

http://www.nlm.nih.gov/medlineplus/ency/article/000720.htm

Concise document explaining neurosarc.

http://www.nfcacares.org/

Website for caregivers/family.

http://www.medscape.com/viewarticle/466526?src=search

Pro/Con debate re: Prednisone

http://www.sarcoidcenter.com

Website with many links.

http://http://www.pinali.unipd.it/sarcoid/sarcoid/index.htm

Website of World Assoc. of Sarcoidoidosis (physicians all over

the world involved in sarc research & treatment. Great referral

source for your brother's doctors.)

These are just a few of the resources available from the Links

section; I hope I haven't overwhelmed you! I'm glad you found us,

but am so sorry that the sarc monster has raised his hairy, slimy

head again. Hugs from Indiana, Ramblin' Rose

>

> Hello My name is and I have brother who has neurosarcoidosis

> and hope I'm still welcome on this board. I've been trying to learn

as

> much as I can about this and yet find really not alot. My brother

was

> diagnosed with this about a year ago..he was in the hospital for

about

> a month and they ran every test under the sun..and to be diagnosed

in

> end with neurosarcoidosis..my brother was the picture of health

till

> this...now he isn't doing well,can't work,or anything...from what I

> know and understand is that it's spread everywhere lungs,brain and

> throughtout body..when they'd done exrays his body was all white

> spots..which my mother explains to me is the inflamation..he's been

in

> and out in past month in the hospital and not doing well...they

tried

> to take him off prednisone..but got bad and is back on...he's

gained

> so much weight from this..I know I'm rambling but I really don't

know

> what to ask or say. But hoping to find some help/support from

someone

> who understands this.

>

>

>