Re: Death - ns explained

[Guest guest]

thankyoutt racey for your email your answers helped clarrify a few things for my family

Subject: Death - ns explainedTo: neurosarcoidosis Received: Sunday, 25 January, 2009, 6:27 PM

My condolences for the loss of your mother. When I read your post, I was not surprised that she'd been being treated for Lupus. So many of the auto-immune diseases have the same symptoms.

Quite often, our doctors will never see neurosarcoidosis, or don't have the knowledge that all those sypmtoms of joint pain, muscle and bone pain, dementia, loss of balance and multi-tasking skills, are all part of sarcoidosis. Even with confirmed sarcoidosis of the lungs and eyes, it still took 2 yrs of testing to get the NS diagnosis. They had to rule out Multliple Sclerosis, Lupus, Diabetes, and a horde of other auto-immune diseases.

So far, modern medicine does not know the cause of sarcoidosis, and we have no cure. All of the autoimmune diseases rely on the same meds -Prednisone, Methotrexate, Plaquenil, Arava, Imuran, the various DMARDS-Disease Modifying AntiRhuematic Drugs, Biologicals -BRM,'s== Humria, Enbrel, Remicade-- to try to get the systemic inflammation of these diseases down, and they all suppress the immune system,. This makes it so very challenging when we get any infection, as our bodies can't fight off fungus and bacterial infections very well.

MS and Lupus do have some better treatments, and they both have specific tests that say this is MS or Lupus. NS does not have any one specific test-- and is literally a diagnosis of last resort-- when the others have been ruled out.

Some of the the studies done over the last few years are leaning towards a genetic predisposition to auto-immune disease, and sarcoidosis seems to be more prevalent between siblings, but not necessarily from parent to child. There is a common factor of high exposure to pesticides and herbicides, dust (soldiers are coming back with pulmonary sarcoidosis when they'be been stationed in the Middle East) - there is also a higher than normal incidence in those that worked in the Twin towers following 9/11. It is interesting that in this group, we have a fair amount of nurses that have NS, and those of us that worked in the medical in one capacity or another.

There also is some studies that suggest that we ended up with some form of virus, that set our immune system into motion, (possibly a rogue TB type virus) and we don't have the right DNA to turn off the "cascade" of immune cells. Our bodies generally send white cells to an injury or insult, then it sends TNF-a cells to clear out the white cells, then TNF-b cells come in to clear out the TNF-a. We don't clear any of this, and the cells build one on top of the other, and form microscopic granulomas. OVer time, these granulomas change the structure of our organs, and then the organs don't function correctly.

I know you have alot of questions, and we will do our best to help you find answers. Don't be afraid to ask away-- no question is ever seen as dumb.

Do be patient, all the moderators and owners have this disease, and sometimes it is a day or so before someone comes online to answer questions. You can post your questions right here on the group board-- and the moderators will get them. You will also find alot of support for the challenges you face in trying to understand what happened to your Mom.

Again, my heartfelt condolences,

Sincerely,

Tracie

NS Co-owner/moderator

Stay connected to the people that matter most with a smarter inbox. Take a look.

[Guest guest]

I was wondering if anyone knows in our group if NS is genetic.Also my mother was affected in the brain by this disease it didnt affect her lungs is that normal? cheers new member Margaret

Subject: Death - ns explainedTo: neurosarcoidosis Received: Sunday, 25 January, 2009, 6:27 PM

My condolences for the loss of your mother. When I read your post, I was not surprised that she'd been being treated for Lupus. So many of the auto-immune diseases have the same symptoms.

Quite often, our doctors will never see neurosarcoidosis, or don't have the knowledge that all those sypmtoms of joint pain, muscle and bone pain, dementia, loss of balance and multi-tasking skills, are all part of sarcoidosis. Even with confirmed sarcoidosis of the lungs and eyes, it still took 2 yrs of testing to get the NS diagnosis. They had to rule out Multliple Sclerosis, Lupus, Diabetes, and a horde of other auto-immune diseases.

So far, modern medicine does not know the cause of sarcoidosis, and we have no cure. All of the autoimmune diseases rely on the same meds -Prednisone, Methotrexate, Plaquenil, Arava, Imuran, the various DMARDS-Disease Modifying AntiRhuematic Drugs, Biologicals -BRM,'s== Humria, Enbrel, Remicade-- to try to get the systemic inflammation of these diseases down, and they all suppress the immune system,. This makes it so very challenging when we get any infection, as our bodies can't fight off fungus and bacterial infections very well.

MS and Lupus do have some better treatments, and they both have specific tests that say this is MS or Lupus. NS does not have any one specific test-- and is literally a diagnosis of last resort-- when the others have been ruled out.

Some of the the studies done over the last few years are leaning towards a genetic predisposition to auto-immune disease, and sarcoidosis seems to be more prevalent between siblings, but not necessarily from parent to child. There is a common factor of high exposure to pesticides and herbicides, dust (soldiers are coming back with pulmonary sarcoidosis when they'be been stationed in the Middle East) - there is also a higher than normal incidence in those that worked in the Twin towers following 9/11. It is interesting that in this group, we have a fair amount of nurses that have NS, and those of us that worked in the medical in one capacity or another.

There also is some studies that suggest that we ended up with some form of virus, that set our immune system into motion, (possibly a rogue TB type virus) and we don't have the right DNA to turn off the "cascade" of immune cells. Our bodies generally send white cells to an injury or insult, then it sends TNF-a cells to clear out the white cells, then TNF-b cells come in to clear out the TNF-a. We don't clear any of this, and the cells build one on top of the other, and form microscopic granulomas. OVer time, these granulomas change the structure of our organs, and then the organs don't function correctly.

I know you have alot of questions, and we will do our best to help you find answers. Don't be afraid to ask away-- no question is ever seen as dumb.

Do be patient, all the moderators and owners have this disease, and sometimes it is a day or so before someone comes online to answer questions. You can post your questions right here on the group board-- and the moderators will get them. You will also find alot of support for the challenges you face in trying to understand what happened to your Mom.

Again, my heartfelt condolences,

Sincerely,

Tracie

NS Co-owner/moderator

Stay connected to the people that matter most with a smarter inbox. Take a look.

[Guest guest]

Margaret,

My mother had sarcoidosis of the lungs and I have it only in my brain at this time. Sarcoidosis has at this time has not been proven to be genetic. There are many theories out there about the cause but no proof. I think it (sarcoidosis) is somewhat genetic in part do to my mother having it prior to my birth. If so feel hopeful for she able to conquer it. There is no sign of sarcoidosis in lungs anymore - She beat it. I have more theories on the cause of sarcoidosis then I remember. I truly pray they (Doctors) will learn the cause to sarcoidosis because that may lead to cure. Wishing you many pain-free and blessed days.

Greg

-- Death - ns explainedTo: neurosarcoidosis Received: Sunday, 25 January, 2009, 6:27 PM

My condolences for the loss of your mother. When I read your post, I was not surprised that she'd been being treated for Lupus. So many of the auto-immune diseases have the same symptoms.

Quite often, our doctors will never see neurosarcoidosis, or don't have the knowledge that all those sypmtoms of joint pain, muscle and bone pain, dementia, loss of balance and multi-tasking skills, are all part of sarcoidosis. Even with confirmed sarcoidosis of the lungs and eyes, it still took 2 yrs of testing to get the NS diagnosis. They had to rule out Multliple Sclerosis, Lupus, Diabetes, and a horde of other auto-immune diseases.

So far, modern medicine does not know the cause of sarcoidosis, and we have no cure. All of the autoimmune diseases rely on the same meds -Prednisone, Methotrexate, Plaquenil, Arava, Imuran, the various DMARDS-Disease Modifying AntiRhuematic Drugs, Biologicals -BRM,'s== Humria, Enbrel, Remicade-- to try to get the systemic inflammation of these diseases down, and they all suppress the immune system,. This makes it so very challenging when we get any infection, as our bodies can't fight off fungus and bacterial infections very well.

MS and Lupus do have some better treatments, and they both have specific tests that say this is MS or Lupus. NS does not have any one specific test-- and is literally a diagnosis of last resort-- when the others have been ruled out.

Some of the the studies done over the last few years are leaning towards a genetic predisposition to auto-immune disease, and sarcoidosis seems to be more prevalent between siblings, but not necessarily from parent to child. There is a common factor of high exposure to pesticides and herbicides, dust (soldiers are coming back with pulmonary sarcoidosis when they'be been stationed in the Middle East) - there is also a higher than normal incidence in those that worked in the Twin towers following 9/11. It is interesting that in this group, we have a fair amount of nurses that have NS, and those of us that worked in the medical in one capacity or another.

There also is some studies that suggest that we ended up with some form of virus, that set our immune system into motion, (possibly a rogue TB type virus) and we don't have the right DNA to turn off the "cascade" of immune cells. Our bodies generally send white cells to an injury or insult, then it sends TNF-a cells to clear out the white cells, then TNF-b cells come in to clear out the TNF-a. We don't clear any of this, and the cells build one on top of the other, and form microscopic granulomas. OVer time, these granulomas change the structure of our organs, and then the organs don't function correctly.

I know you have alot of questions, and we will do our best to help you find answers. Don't be afraid to ask away-- no question is ever seen as dumb.

Do be patient, all the moderators and owners have this disease, and sometimes it is a day or so before someone comes online to answer questions. You can post your questions right here on the group board-- and the moderators will get them. You will also find alot of support for the challenges you face in trying to understand what happened to your Mom.

Again, my heartfelt condolences,

Sincerely,

Tracie

NS Co-owner/moderator

Stay connected to the people that matter most with a smarter inbox. Take a look.

[Guest guest]



I have read many articles about NS. It is said it is prevalent in families. No one in my family has had it. I have also said it is not so. Because they don't know what causes it I guess they can't tell if it is passed on to others. It is so not known about which makes it hard to diagnose and hard to treat.

I have had NS since 2005. It hit me quickly and hard. I was not able to move anything but my head. I was in one hospital for 30 days before they chose to send me to a nursing home. I slowly began to improve but can still not walk but a few feet. I use a walker for that. I am taking Methotrexate, plaquinil and predisone, along with some 20 other pills to help with those 3. It is a constant battle but not a bad one. I watch what I do because I wear out so quickly. Right now I am going through a flu or something. I haven't been able to keep anything down for 2 weeks now and I am getting dehyradeted. The doctors are watching me but can't figure out what it is yet. I am hoping the sarc monster has not spread to someplace else. I am a tough old broad and I will not let it beat me. I have too much to do in my life with my family.

I am sorry I ran off here I have said more than I wanted to.

You are in my prayers for a healthy outcome. Hang in there and heed the advise of the moderators. They are knowledgeable and informative.

God Bless You.

Jackie

Death - ns explainedTo: neurosarcoidosis Received: Sunday, 25 January, 2009, 6:27 PM

My condolences for the loss of your mother. When I read your post, I was not surprised that she'd been being treated for Lupus. So many of the auto-immune diseases have the same symptoms.

Quite often, our doctors will never see neurosarcoidosis, or don't have the knowledge that all those sypmtoms of joint pain, muscle and bone pain, dementia, loss of balance and multi-tasking skills, are all part of sarcoidosis. Even with confirmed sarcoidosis of the lungs and eyes, it still took 2 yrs of testing to get the NS diagnosis. They had to rule out Multliple Sclerosis, Lupus, Diabetes, and a horde of other auto-immune diseases.

So far, modern medicine does not know the cause of sarcoidosis, and we have no cure. All of the autoimmune diseases rely on the same meds -Prednisone, Methotrexate, Plaquenil, Arava, Imuran, the various DMARDS-Disease Modifying AntiRhuematic Drugs, Biologicals -BRM,'s== Humria, Enbrel, Remicade-- to try to get the systemic inflammation of these diseases down, and they all suppress the immune system,. This makes it so very challenging when we get any infection, as our bodies can't fight off fungus and bacterial infections very well.

MS and Lupus do have some better treatments, and they both have specific tests that say this is MS or Lupus. NS does not have any one specific test-- and is literally a diagnosis of last resort-- when the others have been ruled out.

Some of the the studies done over the last few years are leaning towards a genetic predisposition to auto-immune disease, and sarcoidosis seems to be more prevalent between siblings, but not necessarily from parent to child. There is a common factor of high exposure to pesticides and herbicides, dust (soldiers are coming back with pulmonary sarcoidosis when they'be been stationed in the Middle East) - there is also a higher than normal incidence in those that worked in the Twin towers following 9/11. It is interesting that in this group, we have a fair amount of nurses that have NS, and those of us that worked in the medical in one capacity or another.

There also is some studies that suggest that we ended up with some form of virus, that set our immune system into motion, (possibly a rogue TB type virus) and we don't have the right DNA to turn off the "cascade" of immune cells. Our bodies generally send white cells to an injury or insult, then it sends TNF-a cells to clear out the white cells, then TNF-b cells come in to clear out the TNF-a. We don't clear any of this, and the cells build one on top of the other, and form microscopic granulomas. OVer time, these granulomas change the structure of our organs, and then the organs don't function correctly.

I know you have alot of questions, and we will do our best to help you find answers. Don't be afraid to ask away-- no question is ever seen as dumb.

Do be patient, all the moderators and owners have this disease, and sometimes it is a day or so before someone comes online to answer questions. You can post your questions right here on the group board-- and the moderators will get them. You will also find alot of support for the challenges you face in trying to understand what happened to your Mom.

Again, my heartfelt condolences,

Sincerely,

Tracie

NS Co-owner/moderator

Stay connected to the people that matter most with a smarter inbox. Take a look.

[Guest guest]

Margaret, I don't think they've done a lot of research on this topic, However, I am a firm believer that it is genetic, I have it, My Mother was dx with it too, but she has not had any problems, her sister has been sick for as long as I can remember and was recently dx with Sarcoid,

and my Mother has 2 cousins that live in Norway with Sarcoid, over there it is like MS is here in the states. So with that much in my family, I am convinced that it is genetic. Marla

I was wondering if anyone knows in our group if NS is genetic.Also my mother was affected in the brain by this disease it didnt affect her lungs is that normal? cheers new member Margaret

Subject: Death - ns explained

To: neurosarcoidosis Received: Sunday, 25 January, 2009, 6:27 PM

My condolences for the loss of your mother. When I read your post, I was not surprised that she'd been being treated for Lupus. So many of the auto-immune diseases have the same symptoms.

Quite often, our doctors will never see neurosarcoidosis, or don't have the knowledge that all those sypmtoms of joint pain, muscle and bone pain, dementia, loss of balance and multi-tasking skills, are all part of sarcoidosis. Even with confirmed sarcoidosis of the lungs and eyes, it still took 2 yrs of testing to get the NS diagnosis. They had to rule out Multliple Sclerosis, Lupus, Diabetes, and a horde of other auto-immune diseases.

So far, modern medicine does not know the cause of sarcoidosis, and we have no cure. All of the autoimmune diseases rely on the same meds -Prednisone, Methotrexate, Plaquenil, Arava, Imuran, the various DMARDS-Disease Modifying AntiRhuematic Drugs, Biologicals -BRM,'s== Humria, Enbrel, Remicade-- to try to get the systemic inflammation of these diseases down, and they all suppress the immune system,. This makes it so very challenging when we get any infection, as our bodies can't fight off fungus and bacterial infections very well.

MS and Lupus do have some better treatments, and they both have specific tests that say this is MS or Lupus. NS does not have any one specific test-- and is literally a diagnosis of last resort-- when the others have been ruled out.

Some of the the studies done over the last few years are leaning towards a genetic predisposition to auto-immune disease, and sarcoidosis seems to be more prevalent between siblings, but not necessarily from parent to child. There is a common factor of high exposure to pesticides and herbicides, dust (soldiers are coming back with pulmonary sarcoidosis when they'be been stationed in the Middle East) - there is also a higher than normal incidence in those that worked in the Twin towers following 9/11. It is interesting that in this group, we have a fair amount of nurses that have NS, and those of us that worked in the medical in one capacity or another.

There also is some studies that suggest that we ended up with some form of virus, that set our immune system into motion, (possibly a rogue TB type virus) and we don't have the right DNA to turn off the " cascade " of immune cells. Our bodies generally send white cells to an injury or insult, then it sends TNF-a cells to clear out the white cells, then TNF-b cells come in to clear out the TNF-a. We don't clear any of this, and the cells build one on top of the other, and form microscopic granulomas. OVer time, these granulomas change the structure of our organs, and then the organs don't function correctly.

I know you have alot of questions, and we will do our best to help you find answers. Don't be afraid to ask away-- no question is ever seen as dumb.

Do be patient, all the moderators and owners have this disease, and sometimes it is a day or so before someone comes online to answer questions. You can post your questions right here on the group board-- and the moderators will get them. You will also find alot of support for the challenges you face in trying to understand what happened to your Mom.

Again, my heartfelt condolences,

Sincerely,

Tracie

NS Co-owner/moderator

Stay connected to the people that matter most with a smarter inbox. Take a look.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)