Re: new to this scary world

[Guest guest]

Hi ,

I'm so sorry that you had to find us. This disease, although scary, can be controlled. It will take more than prednisone, especially since your sarcoidosis is neuro. We have alot of sites and articles in our LINKS section--the address is at the bottom of this and every email. Just scroll down and you'll see it. You will need the name and password that you use for YAHOO to access the LINKS.

We're 350+ people strong, and are truly a family trying to be as healthy as we can be.

There are several medications that will help out. The new class of BRM's--(Biological Response Modifiers) Remicade, Humira and Enbrel that are showing promise. The DMARDS (Disease Modifying AntiRheumatic Drugs) Imuran, Methotrexate, Arava, and others (see www.arthritis.org for a list of these drugs by class) as well as the Prednisone and steroids that will suppress your immune system and get it to stop attacking you.

What we know is that NS is an autoimmune disease. This means that your immune system thinks your body is the enemy. Something- whether enviromental with a genetic predispostion--turned your immune system on-- and now it won't turn off. So, you have to use immunosupressants to stop the immune system.

Sarc doesn't care what system it attacks--it likes them all. Primarily, it's lungs and eyes, and least likely (or most often misdiagnosed) is when it hits our brains. That's neurosarcoidosis.

What happens is that the immune system sends in the cells to fight an infection or injury. Then it sends in the cleaning crew of cells, and then the next level of cleaners--and instead of clearing out the problem--the cells build on each level, and form granulomas (plaques). This can be anything from plaques on the brain--but it can also be inflammation on the blood cells themself--so that your blood vessels become inflammed. When this happens in your brain-- you can end up with the impaired speech, change in personality, behavior, problem solving, etc.

When it happens in your lungs--your lungs scar and become fibrosed. Then the air you breath in can't get across the lung membranes, and you find yourself fighting for air. If it is in your joints and ligaments--then you have an arthritic component.

The problem lies in that we don't know what causes sarcoidosis, so they havent found a cure. What we're about at this point in time is to control as much as the progression as we can. And pray for answers.

You'll find that there is a wealth of information from our members, and that we laugh, joke, cry, rant and rave-- and then we pick ourself up and go another round. The exhaustion and fatigue is horrible. The only answer is to pace yourself. It's so hard when the kids are little, and we're parenting and trying to get that magic foothold for our families future-- but after living with pulmonary, neuro, heart, bone and blood sarc for the last 15 years, I can tell you that my family would rather have me alive and with them-- than to have me crippled up in bed.

Do check out our ARCHIVES and LINKS--all the tests, MRI's, CT's, Drugs, are in those articles and sites. Print out the ones you want to share with your MD's. You'll need a Neurologist and a Rheumatologist and an Ophthalmologist to work together to treat your NS. You'll be their teacher about this disease--they still think it's extremely rare. If you're not able to work, start the process for SSDI-- and get that going. (You have to have been off work for 6 consecutive months, and then file, it'll be 6 months or more to get approved) and it goes retro to when you first filed--as long as you make sure not to drop the ball and miss deadlines.

We're here--and if you've got questions- someone will have an answer. It may be a day or so before we respond--even the moderators and owners of this group are fighting this disease--so we too have to pace ourself. There are 5 of us available most of the time--so it goes pretty fast.

I might also suggest that you get your wife involved--she will need to be your voice and witness and advocate if you have days where you can't do it. So she too, needs to understand this disease.

Welcome to the family,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi ,

I'm so sorry that you had to find us. This disease, although scary, can be controlled. It will take more than prednisone, especially since your sarcoidosis is neuro. We have alot of sites and articles in our LINKS section--the address is at the bottom of this and every email. Just scroll down and you'll see it. You will need the name and password that you use for YAHOO to access the LINKS.

We're 350+ people strong, and are truly a family trying to be as healthy as we can be.

There are several medications that will help out. The new class of BRM's--(Biological Response Modifiers) Remicade, Humira and Enbrel that are showing promise. The DMARDS (Disease Modifying AntiRheumatic Drugs) Imuran, Methotrexate, Arava, and others (see www.arthritis.org for a list of these drugs by class) as well as the Prednisone and steroids that will suppress your immune system and get it to stop attacking you.

What we know is that NS is an autoimmune disease. This means that your immune system thinks your body is the enemy. Something- whether enviromental with a genetic predispostion--turned your immune system on-- and now it won't turn off. So, you have to use immunosupressants to stop the immune system.

Sarc doesn't care what system it attacks--it likes them all. Primarily, it's lungs and eyes, and least likely (or most often misdiagnosed) is when it hits our brains. That's neurosarcoidosis.

What happens is that the immune system sends in the cells to fight an infection or injury. Then it sends in the cleaning crew of cells, and then the next level of cleaners--and instead of clearing out the problem--the cells build on each level, and form granulomas (plaques). This can be anything from plaques on the brain--but it can also be inflammation on the blood cells themself--so that your blood vessels become inflammed. When this happens in your brain-- you can end up with the impaired speech, change in personality, behavior, problem solving, etc.

When it happens in your lungs--your lungs scar and become fibrosed. Then the air you breath in can't get across the lung membranes, and you find yourself fighting for air. If it is in your joints and ligaments--then you have an arthritic component.

The problem lies in that we don't know what causes sarcoidosis, so they havent found a cure. What we're about at this point in time is to control as much as the progression as we can. And pray for answers.

You'll find that there is a wealth of information from our members, and that we laugh, joke, cry, rant and rave-- and then we pick ourself up and go another round. The exhaustion and fatigue is horrible. The only answer is to pace yourself. It's so hard when the kids are little, and we're parenting and trying to get that magic foothold for our families future-- but after living with pulmonary, neuro, heart, bone and blood sarc for the last 15 years, I can tell you that my family would rather have me alive and with them-- than to have me crippled up in bed.

Do check out our ARCHIVES and LINKS--all the tests, MRI's, CT's, Drugs, are in those articles and sites. Print out the ones you want to share with your MD's. You'll need a Neurologist and a Rheumatologist and an Ophthalmologist to work together to treat your NS. You'll be their teacher about this disease--they still think it's extremely rare. If you're not able to work, start the process for SSDI-- and get that going. (You have to have been off work for 6 consecutive months, and then file, it'll be 6 months or more to get approved) and it goes retro to when you first filed--as long as you make sure not to drop the ball and miss deadlines.

We're here--and if you've got questions- someone will have an answer. It may be a day or so before we respond--even the moderators and owners of this group are fighting this disease--so we too have to pace ourself. There are 5 of us available most of the time--so it goes pretty fast.

I might also suggest that you get your wife involved--she will need to be your voice and witness and advocate if you have days where you can't do it. So she too, needs to understand this disease.

Welcome to the family,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi ,

I'm so sorry that you had to find us. This disease, although scary, can be controlled. It will take more than prednisone, especially since your sarcoidosis is neuro. We have alot of sites and articles in our LINKS section--the address is at the bottom of this and every email. Just scroll down and you'll see it. You will need the name and password that you use for YAHOO to access the LINKS.

We're 350+ people strong, and are truly a family trying to be as healthy as we can be.

There are several medications that will help out. The new class of BRM's--(Biological Response Modifiers) Remicade, Humira and Enbrel that are showing promise. The DMARDS (Disease Modifying AntiRheumatic Drugs) Imuran, Methotrexate, Arava, and others (see www.arthritis.org for a list of these drugs by class) as well as the Prednisone and steroids that will suppress your immune system and get it to stop attacking you.

What we know is that NS is an autoimmune disease. This means that your immune system thinks your body is the enemy. Something- whether enviromental with a genetic predispostion--turned your immune system on-- and now it won't turn off. So, you have to use immunosupressants to stop the immune system.

Sarc doesn't care what system it attacks--it likes them all. Primarily, it's lungs and eyes, and least likely (or most often misdiagnosed) is when it hits our brains. That's neurosarcoidosis.

What happens is that the immune system sends in the cells to fight an infection or injury. Then it sends in the cleaning crew of cells, and then the next level of cleaners--and instead of clearing out the problem--the cells build on each level, and form granulomas (plaques). This can be anything from plaques on the brain--but it can also be inflammation on the blood cells themself--so that your blood vessels become inflammed. When this happens in your brain-- you can end up with the impaired speech, change in personality, behavior, problem solving, etc.

When it happens in your lungs--your lungs scar and become fibrosed. Then the air you breath in can't get across the lung membranes, and you find yourself fighting for air. If it is in your joints and ligaments--then you have an arthritic component.

The problem lies in that we don't know what causes sarcoidosis, so they havent found a cure. What we're about at this point in time is to control as much as the progression as we can. And pray for answers.

You'll find that there is a wealth of information from our members, and that we laugh, joke, cry, rant and rave-- and then we pick ourself up and go another round. The exhaustion and fatigue is horrible. The only answer is to pace yourself. It's so hard when the kids are little, and we're parenting and trying to get that magic foothold for our families future-- but after living with pulmonary, neuro, heart, bone and blood sarc for the last 15 years, I can tell you that my family would rather have me alive and with them-- than to have me crippled up in bed.

Do check out our ARCHIVES and LINKS--all the tests, MRI's, CT's, Drugs, are in those articles and sites. Print out the ones you want to share with your MD's. You'll need a Neurologist and a Rheumatologist and an Ophthalmologist to work together to treat your NS. You'll be their teacher about this disease--they still think it's extremely rare. If you're not able to work, start the process for SSDI-- and get that going. (You have to have been off work for 6 consecutive months, and then file, it'll be 6 months or more to get approved) and it goes retro to when you first filed--as long as you make sure not to drop the ball and miss deadlines.

We're here--and if you've got questions- someone will have an answer. It may be a day or so before we respond--even the moderators and owners of this group are fighting this disease--so we too have to pace ourself. There are 5 of us available most of the time--so it goes pretty fast.

I might also suggest that you get your wife involved--she will need to be your voice and witness and advocate if you have days where you can't do it. So she too, needs to understand this disease.

Welcome to the family,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi

Nice to meet you wish it didn't have to be because of

the sarc. I developed fluid on the brain in 1997 & was

found in the floor by my grown daughter after I didn't

go to work for 3 days. They put in a shunt & didn't

know why the ventricle had shut. I returned to work

eventually. (9 months later actually) Anyway, after a

few years I started with the bee sting feelings & it

took until last year for someone to give me a

diagnosis. I'm on Cytoxan therapy iv every 3 weeks &

it's starting to show a little improvement. I've been

out of work for over a year. I have one grown daughter

& 3 teenage grandchildren. Welcome to the group!

grannylunatic@...

__________________________________________________

[Guest guest]

Hi

Nice to meet you wish it didn't have to be because of

the sarc. I developed fluid on the brain in 1997 & was

found in the floor by my grown daughter after I didn't

go to work for 3 days. They put in a shunt & didn't

know why the ventricle had shut. I returned to work

eventually. (9 months later actually) Anyway, after a

few years I started with the bee sting feelings & it

took until last year for someone to give me a

diagnosis. I'm on Cytoxan therapy iv every 3 weeks &

it's starting to show a little improvement. I've been

out of work for over a year. I have one grown daughter

& 3 teenage grandchildren. Welcome to the group!

grannylunatic@...

__________________________________________________

[Guest guest]

Hi

Nice to meet you wish it didn't have to be because of

the sarc. I developed fluid on the brain in 1997 & was

found in the floor by my grown daughter after I didn't

go to work for 3 days. They put in a shunt & didn't

know why the ventricle had shut. I returned to work

eventually. (9 months later actually) Anyway, after a

few years I started with the bee sting feelings & it

took until last year for someone to give me a

diagnosis. I'm on Cytoxan therapy iv every 3 weeks &

it's starting to show a little improvement. I've been

out of work for over a year. I have one grown daughter

& 3 teenage grandchildren. Welcome to the group!

grannylunatic@...

__________________________________________________

[Guest guest]

i am so sorry you have to be part of this world. But Welcome anyway.

I am 38 widow with a 16 yr old son. I was sick since 1995 they tried to dx me with migraines, until my husband took me to a teaching hospital and i saw chief of Neuro. and there Rheumy Drs. they did 3 spinal taps and angio-grams and many mrs. until then i was on steriods for about 5 yrs.

i had to have a liver biopsy, and lung function test, and all confirmed NS.

i have been on Imuran & plaquinel and many strong pain killers. The dr's say that i am chronic and will most likely not see remission. I strugle day to day. My Neuro Dr said he would like me to do 2 yrs on the chemo and atleast a 6month rest in between. But so far its been 3 yrs and i can't seem to get off. infact he just increased the Imuran.

... but welcome again. there is more just way to much to type .

Hugs and Blessings and a pain free day

IN Pa

[Guest guest]

i am so sorry you have to be part of this world. But Welcome anyway.

I am 38 widow with a 16 yr old son. I was sick since 1995 they tried to dx me with migraines, until my husband took me to a teaching hospital and i saw chief of Neuro. and there Rheumy Drs. they did 3 spinal taps and angio-grams and many mrs. until then i was on steriods for about 5 yrs.

i had to have a liver biopsy, and lung function test, and all confirmed NS.

i have been on Imuran & plaquinel and many strong pain killers. The dr's say that i am chronic and will most likely not see remission. I strugle day to day. My Neuro Dr said he would like me to do 2 yrs on the chemo and atleast a 6month rest in between. But so far its been 3 yrs and i can't seem to get off. infact he just increased the Imuran.

... but welcome again. there is more just way to much to type .

Hugs and Blessings and a pain free day

IN Pa

[Guest guest]

i am so sorry you have to be part of this world. But Welcome anyway.

I am 38 widow with a 16 yr old son. I was sick since 1995 they tried to dx me with migraines, until my husband took me to a teaching hospital and i saw chief of Neuro. and there Rheumy Drs. they did 3 spinal taps and angio-grams and many mrs. until then i was on steriods for about 5 yrs.

i had to have a liver biopsy, and lung function test, and all confirmed NS.

i have been on Imuran & plaquinel and many strong pain killers. The dr's say that i am chronic and will most likely not see remission. I strugle day to day. My Neuro Dr said he would like me to do 2 yrs on the chemo and atleast a 6month rest in between. But so far its been 3 yrs and i can't seem to get off. infact he just increased the Imuran.

... but welcome again. there is more just way to much to type .

Hugs and Blessings and a pain free day

IN Pa

[Guest guest]

,

Hi and welcome, you've found the right place to vent and rant, and

learn, not to mention find a ton of support here.

My name is Marla, I've had Sarc for 11 1/2 years now, been thorough

allot, there are times when hanging in there is all a person is capable

of doing, and times when it's better.

Right now I am doing well, Thank God. In fact going off meds. so there

is always hope in life.

Never give up on Hope.

God Bless,

Marla

Well hello to all,

let me rant for a while and tell you a little about myself, I

am a 35 yo male, married ,two wonderful kids9 and 7. i had been having

severe right arm pain for some time and numbness in both arms and

general feeling of crap tired all the time and night sweets that would

dehydrate me. at the time they did a mri and found severl leasions on

my brain, (to me that was quite scary) I was treated with high doeses

of stearoids and all seemed well that is intil recently, i have

beeenfeeling like crap again my whole personality changed and left eye

intermittent blindness and some mild halosanations (sorry for the

spelling) and once again an MRI was performed and guess what, oh yes

more leasions and a diagnosses of neurosarcoidosis. so here i am,

looking for some other peoples stories and maybe a few friends that

know what im dealing with (sorry dont mean to bring anyone down) oh and

by the way im anthony and i live in norfolk va. love to hear from 1 or

all of you, have a good night and thanks for listining..ttfn

Yahoo! Mail

Use

Photomail to share photos without annoying attachments.

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

,

Hi and welcome, you've found the right place to vent and rant, and

learn, not to mention find a ton of support here.

My name is Marla, I've had Sarc for 11 1/2 years now, been thorough

allot, there are times when hanging in there is all a person is capable

of doing, and times when it's better.

Right now I am doing well, Thank God. In fact going off meds. so there

is always hope in life.

Never give up on Hope.

God Bless,

Marla

Well hello to all,

let me rant for a while and tell you a little about myself, I

am a 35 yo male, married ,two wonderful kids9 and 7. i had been having

severe right arm pain for some time and numbness in both arms and

general feeling of crap tired all the time and night sweets that would

dehydrate me. at the time they did a mri and found severl leasions on

my brain, (to me that was quite scary) I was treated with high doeses

of stearoids and all seemed well that is intil recently, i have

beeenfeeling like crap again my whole personality changed and left eye

intermittent blindness and some mild halosanations (sorry for the

spelling) and once again an MRI was performed and guess what, oh yes

more leasions and a diagnosses of neurosarcoidosis. so here i am,

looking for some other peoples stories and maybe a few friends that

know what im dealing with (sorry dont mean to bring anyone down) oh and

by the way im anthony and i live in norfolk va. love to hear from 1 or

all of you, have a good night and thanks for listining..ttfn

Yahoo! Mail

Use

Photomail to share photos without annoying attachments.

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

,

Hi and welcome, you've found the right place to vent and rant, and

learn, not to mention find a ton of support here.

My name is Marla, I've had Sarc for 11 1/2 years now, been thorough

allot, there are times when hanging in there is all a person is capable

of doing, and times when it's better.

Right now I am doing well, Thank God. In fact going off meds. so there

is always hope in life.

Never give up on Hope.

God Bless,

Marla

Well hello to all,

let me rant for a while and tell you a little about myself, I

am a 35 yo male, married ,two wonderful kids9 and 7. i had been having

severe right arm pain for some time and numbness in both arms and

general feeling of crap tired all the time and night sweets that would

dehydrate me. at the time they did a mri and found severl leasions on

my brain, (to me that was quite scary) I was treated with high doeses

of stearoids and all seemed well that is intil recently, i have

beeenfeeling like crap again my whole personality changed and left eye

intermittent blindness and some mild halosanations (sorry for the

spelling) and once again an MRI was performed and guess what, oh yes

more leasions and a diagnosses of neurosarcoidosis. so here i am,

looking for some other peoples stories and maybe a few friends that

know what im dealing with (sorry dont mean to bring anyone down) oh and

by the way im anthony and i live in norfolk va. love to hear from 1 or

all of you, have a good night and thanks for listining..ttfn

Yahoo! Mail

Use

Photomail to share photos without annoying attachments.

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

Thanks for the kind words, and yes you are right when you say there is so much more to write, when i have time i will e-mail you again, have a great day. thanks again tonyanci3ntgoddess@... wrote: i am so sorry you have to be part of this world. But Welcome anyway. I am 38 widow with a 16 yr old son. I was sick since 1995 they tried to dx me with migraines, until my husband took me to a teaching hospital and i saw chief of Neuro. and there Rheumy Drs. they did 3 spinal taps and angio-grams and many mrs. until then i was on steriods for about 5 yrs. i had to have a liver biopsy, and lung function test, and all confirmed NS. i have been on Imuran & plaquinel and many strong

pain killers. The dr's say that i am chronic and will most likely not see remission. I strugle day to day. My Neuro Dr said he would like me to do 2 yrs on the chemo and atleast a 6month rest in between. But so far its been 3 yrs and i can't seem to get off. infact he just increased the Imuran. .. but welcome again. there is more just way to much to type . Hugs and Blessings and a pain free day IN Pa

Yahoo! Mail Use Photomail to share photos without annoying attachments.

[Guest guest]

Thanks for the kind words, and yes you are right when you say there is so much more to write, when i have time i will e-mail you again, have a great day. thanks again tonyanci3ntgoddess@... wrote: i am so sorry you have to be part of this world. But Welcome anyway. I am 38 widow with a 16 yr old son. I was sick since 1995 they tried to dx me with migraines, until my husband took me to a teaching hospital and i saw chief of Neuro. and there Rheumy Drs. they did 3 spinal taps and angio-grams and many mrs. until then i was on steriods for about 5 yrs. i had to have a liver biopsy, and lung function test, and all confirmed NS. i have been on Imuran & plaquinel and many strong

pain killers. The dr's say that i am chronic and will most likely not see remission. I strugle day to day. My Neuro Dr said he would like me to do 2 yrs on the chemo and atleast a 6month rest in between. But so far its been 3 yrs and i can't seem to get off. infact he just increased the Imuran. .. but welcome again. there is more just way to much to type . Hugs and Blessings and a pain free day IN Pa

Yahoo! Mail Use Photomail to share photos without annoying attachments.

[Guest guest]

Thanks for the kind words, and yes you are right when you say there is so much more to write, when i have time i will e-mail you again, have a great day. thanks again tonyanci3ntgoddess@... wrote: i am so sorry you have to be part of this world. But Welcome anyway. I am 38 widow with a 16 yr old son. I was sick since 1995 they tried to dx me with migraines, until my husband took me to a teaching hospital and i saw chief of Neuro. and there Rheumy Drs. they did 3 spinal taps and angio-grams and many mrs. until then i was on steriods for about 5 yrs. i had to have a liver biopsy, and lung function test, and all confirmed NS. i have been on Imuran & plaquinel and many strong

pain killers. The dr's say that i am chronic and will most likely not see remission. I strugle day to day. My Neuro Dr said he would like me to do 2 yrs on the chemo and atleast a 6month rest in between. But so far its been 3 yrs and i can't seem to get off. infact he just increased the Imuran. .. but welcome again. there is more just way to much to type . Hugs and Blessings and a pain free day IN Pa

Yahoo! Mail Use Photomail to share photos without annoying attachments.

[Guest guest]

thanks for the kind words and i will write again when i have a few mins. tony.marla wrote: , Hi and welcome, you've found the right place to vent and rant, and learn, not to mention find a ton of support here. My name is Marla, I've had Sarc for 11 1/2 years now, been thorough allot, there are times when hanging in there is all a person is capable of doing, and times when it's better. Right now I am doing well, Thank God. In fact going off meds. so there is always hope in life. Never give up on Hope. God Bless, Marla Well hello to all, let me rant for a while and tell you a little about myself, I am a 35 yo male, married ,two wonderful kids9 and 7. i had been having

severe right arm pain for some time and numbness in both arms and general feeling of crap tired all the time and night sweets that would dehydrate me. at the time they did a mri and found severl leasions on my brain, (to me that was quite scary) I was treated with high doeses of stearoids and all seemed well that is intil recently, i have beeenfeeling like crap again my whole personality changed and left eye intermittent blindness and some mild halosanations (sorry for the spelling) and once again an MRI was performed and guess what, oh yes more leasions and a diagnosses of neurosarcoidosis. so here i am, looking for some other peoples stories and maybe a few friends that know what im dealing with (sorry dont mean to bring anyone down) oh and by the way im anthony and i live in norfolk va. love to hear from 1 or all of you, have a good night and thanks for listining..ttfn Yahoo! MailUse Photomail to share photos without annoying attachments. -- The Lord bless you and keep you: The Lord make his face to shine upon you, and be gracious to you: The Lord lift up his countenance upon you and give you peace. Numbers 6:24-26 begin:vcardfn:Marla Bramern:;Marla tel;work:tel;home:version:2.1end:vcard

Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars.

[Guest guest]

thanks for the kind words and i will write again when i have a few mins. tony.marla wrote: , Hi and welcome, you've found the right place to vent and rant, and learn, not to mention find a ton of support here. My name is Marla, I've had Sarc for 11 1/2 years now, been thorough allot, there are times when hanging in there is all a person is capable of doing, and times when it's better. Right now I am doing well, Thank God. In fact going off meds. so there is always hope in life. Never give up on Hope. God Bless, Marla Well hello to all, let me rant for a while and tell you a little about myself, I am a 35 yo male, married ,two wonderful kids9 and 7. i had been having

severe right arm pain for some time and numbness in both arms and general feeling of crap tired all the time and night sweets that would dehydrate me. at the time they did a mri and found severl leasions on my brain, (to me that was quite scary) I was treated with high doeses of stearoids and all seemed well that is intil recently, i have beeenfeeling like crap again my whole personality changed and left eye intermittent blindness and some mild halosanations (sorry for the spelling) and once again an MRI was performed and guess what, oh yes more leasions and a diagnosses of neurosarcoidosis. so here i am, looking for some other peoples stories and maybe a few friends that know what im dealing with (sorry dont mean to bring anyone down) oh and by the way im anthony and i live in norfolk va. love to hear from 1 or all of you, have a good night and thanks for listining..ttfn Yahoo! MailUse Photomail to share photos without annoying attachments. -- The Lord bless you and keep you: The Lord make his face to shine upon you, and be gracious to you: The Lord lift up his countenance upon you and give you peace. Numbers 6:24-26 begin:vcardfn:Marla Bramern:;Marla tel;work:tel;home:version:2.1end:vcard

Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars.

[Guest guest]

Hi, Tony. Welcome to the group. Nothing like widening your circle of friends, eh? I'm interested in learning how you were diagnosed with neurosarc, since so many doctors are reluctant to make that commitment. Did you have a biopsy positive for sarc, or was the diagnosis based on the brain lesions & symptoms? Has your doctor discussed treatment options with you? Are you being referred to a sarc specialist, or does your doctor seem up-to-date on sarc treatment options?

I hope that you are soon started on a treatment that is likely to be effective. Keep researching & encourage your wife to join us; we have many family & friends of patients post or just lurk & learn.

I am 57, mom of 3 grown children, have 7 grandkids, 2 dogs, 2 cats, my 83 yo mom & my 16 yo granddaughter live with me. After working 10 years as a labor & delivery nurse, then 20 yers as a nurse-midwife, I was forced to quit work & go on disability just over 2 years ago. My most bothersome symptoms right now are fatigue, muscle weakness, severe neuropathic pain in my feet & memory problems/loss of mental stamina & focus.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: new to this scary worldDate: Thu, 9 Feb 2006 20:34:19 -0800 (PST)

Well hello to all,

let me rant for a while and tell you a little about myself, I am a 35 yo male, married ,two wonderful kids9 and 7. i had been having severe right arm pain for some time and numbness in both arms and general feeling of crap tired all the time and night sweets that would dehydrate me. at the time they did a mri and found severl leasions on my brain, (to me that was quite scary) I was treated with high doeses of stearoids and all seemed well that is intil recently, i have beeenfeeling like crap again my whole personality changed and left eye intermittent blindness and some mild halosanations (sorry for the spelling) and once again an MRI was performed and guess what, oh yes more leasions and a diagnosses of neurosarcoidosis. so here i am, looking for some other peoples stories and maybe a few friends that know what im dealing with (sorry dont mean to bring anyone down) oh and by the way im anthony and i live in norfolk va. love to hear from 1 or all of you, have a good night and thanks for listining..ttfn

Yahoo! MailUse Photomail to share photos without annoying attachments. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hi, Tony. Welcome to the group. Nothing like widening your circle of friends, eh? I'm interested in learning how you were diagnosed with neurosarc, since so many doctors are reluctant to make that commitment. Did you have a biopsy positive for sarc, or was the diagnosis based on the brain lesions & symptoms? Has your doctor discussed treatment options with you? Are you being referred to a sarc specialist, or does your doctor seem up-to-date on sarc treatment options?

I hope that you are soon started on a treatment that is likely to be effective. Keep researching & encourage your wife to join us; we have many family & friends of patients post or just lurk & learn.

I am 57, mom of 3 grown children, have 7 grandkids, 2 dogs, 2 cats, my 83 yo mom & my 16 yo granddaughter live with me. After working 10 years as a labor & delivery nurse, then 20 yers as a nurse-midwife, I was forced to quit work & go on disability just over 2 years ago. My most bothersome symptoms right now are fatigue, muscle weakness, severe neuropathic pain in my feet & memory problems/loss of mental stamina & focus.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: new to this scary worldDate: Thu, 9 Feb 2006 20:34:19 -0800 (PST)

Well hello to all,

let me rant for a while and tell you a little about myself, I am a 35 yo male, married ,two wonderful kids9 and 7. i had been having severe right arm pain for some time and numbness in both arms and general feeling of crap tired all the time and night sweets that would dehydrate me. at the time they did a mri and found severl leasions on my brain, (to me that was quite scary) I was treated with high doeses of stearoids and all seemed well that is intil recently, i have beeenfeeling like crap again my whole personality changed and left eye intermittent blindness and some mild halosanations (sorry for the spelling) and once again an MRI was performed and guess what, oh yes more leasions and a diagnosses of neurosarcoidosis. so here i am, looking for some other peoples stories and maybe a few friends that know what im dealing with (sorry dont mean to bring anyone down) oh and by the way im anthony and i live in norfolk va. love to hear from 1 or all of you, have a good night and thanks for listining..ttfn

Yahoo! MailUse Photomail to share photos without annoying attachments. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

hey rose, 15 tears ago i was diagnosed with polmanary sarcoid with lung biopsy and neck and groin lymphnode byopsy (all positive) and all wnet well after 1 year of steroid treatment, after about 10 years i started having probs with unexplained night sweats weight loss and severe arm pain at witch time i had a brain mri, leasions were found and a steroid treatment was started, but it seems it is not doing what it should, my leasions just shift around from time to time and effect different tinhgs at different times (or nothing at all) i have recently lost 30 lbs i have had a severs head ach for over 2 months now and tired all the time, even when i first wake up i feel like i havent slept for weeks. my doc is a nuroligest and i am only his 2nd person with neurosarcoidosis but seems on top of things but the only treatment he is doing is IV stearoids. i would love to hear other peoples treatments so i can descuss them with my doctor for it seems we cant get a hold of this one this time.

got to go for now will write again latter. tonyRose wrote: Hi, Tony. Welcome to the group. Nothing like widening your circle of friends, eh? I'm interested in learning how you were diagnosed with neurosarc, since so many doctors are reluctant to make that commitment. Did you have a biopsy positive for sarc, or was the diagnosis based on the brain lesions & symptoms? Has your doctor discussed treatment options with you? Are you being referred to a sarc specialist, or does your doctor seem up-to-date on sarc treatment options? I hope that you are soon started on a treatment that is likely to be effective. Keep researching & encourage your wife to join us; we have many family & friends of

patients post or just lurk & learn. I am 57, mom of 3 grown children, have 7 grandkids, 2 dogs, 2 cats, my 83 yo mom & my 16 yo granddaughter live with me. After working 10 years as a labor & delivery nurse, then 20 yers as a nurse-midwife, I was forced to quit work & go on disability just over 2 years ago. My most bothersome symptoms right now are fatigue, muscle weakness, severe neuropathic pain in my feet & memory problems/loss of mental stamina & focus. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: new to this scary worldDate: Thu, 9 Feb 2006 20:34:19 -0800 (PST) Well hello to all, let me rant for a while and tell you a little about myself, I am a 35 yo male, married ,two wonderful kids9 and 7. i had been having severe right arm pain for some time and numbness in both arms and general feeling of crap tired all the time and night sweets that would dehydrate me. at the time they did a mri and found severl leasions on my brain, (to me that was quite scary) I was treated with high doeses of stearoids and all seemed well that is intil recently, i have beeenfeeling like crap again my whole personality changed and left eye intermittent blindness and some mild halosanations (sorry for the spelling) and

once again an MRI was performed and guess what, oh yes more leasions and a diagnosses of neurosarcoidosis. so here i am, looking for some other peoples stories and maybe a few friends that know what im dealing with (sorry dont mean to bring anyone down) oh and by the way im anthony and i live in norfolk va. love to hear from 1 or all of you, have a good night and thanks for listining..ttfn Yahoo! MailUse Photomail to share photos without annoying attachments. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hello , sorry to read about your bout with neuro/sarc, but welcome aboard. You've found the appropriate community. I suspect some of the other members mentioned that we are all in the exact same condition, if they haven't said it yet -- they will. I'm still learning about this dreaded monster and its a year and a half since my affliction. Each day is a challenge. I'm hopeful tho that my doctors will help me control this disease where its manageable and my pain is minimal. It looks like we'e headed in that direction. Ciao, Marge. anthony duquette wrote: Well hello to all, let me rant for a while and tell you a little about myself, I am a 35 yo male, married ,two wonderful kids9 and 7. i had been having severe right arm pain for some time and numbness in both arms and general feeling of crap tired all the time and night sweets that would dehydrate me. at the time they did a mri and found severl leasions on my brain, (to me that was quite scary) I was treated with high doeses of stearoids and all seemed well that is intil recently, i have beeenfeeling like crap again my whole personality changed and left eye intermittent blindness and some mild halosanations (sorry for the spelling) and once again an MRI was performed and guess what, oh yes more leasions and a diagnosses of neurosarcoidosis. so here i am, looking for some other peoples stories and maybe a few friends that know what im dealing with (sorry dont mean to bring anyone

down) oh and by the way im anthony and i live in norfolk va. love to hear from 1 or all of you, have a good night and thanks for listining..ttfn Yahoo! MailUse Photomail to share photos without annoying attachments.

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