Re: [SPAM]Re: Re: Good morning all............

April 29, 2008

Jackie, Have a good trip, I hope all goes well. We need you too, everyone's input is so important, we are the ones basically writing the pages in the book of NS, I hope it is not genetic, but besides myself having Sarcoid, so does my Mother, Aunt, and two of my mother's 2nd cousins who live in Norway, My Mother was a nurse as I was, My Aunt I think worked for a very short time in a nursing home, maybe laundry, but she's been sick for as long as I can remember, so I have to think there is some connection there? Marla

Tracie

Are you and others saying that this sarc monster that we got might be from, or in accordance with, working in the medical field. I was an CNA for twenty years. In nursing homes that did, and some not, allow us to do certain procedures involving medication. Also I was put into the laundry dept some days when they needed help. Could this, or the fact that the facility that I was working at last was built on a landfill. Could this all have kicked in my system to this disease? I know you don't know the answer for everything I would just like an opinion from you.

I have also heard that it may be with us from birth and it takes something and sometime to kick in. Another theory is that it is heredity in families. Can you add to that? I have 2 children in the medical field.

Thank you for any help you may be able to give me. In favor of it or not.

I do have some good news. We are taking the Amtrax to Devils Lake tomorrow. That is North Dakota. We want to see how I do on the train because we want to go west and back through the Canadian Rockies. So this is a test. Wish me luck.

In case you all didn't know I need you all. Someone understands mostly what is going on with us. I thank God for you all.

Jackie

Be well and happy.

Re: Good morning all............It's a beautiful morning here in NC after two days of much-needed rain. I haven't posted often but I've learned so much from this group since I discovered it a couple of months ago. Welcome to all who have recently joined and my sympathies that you had to search for us. If you care to know any more, here is my story. I'm curious to know how common my course has been since my doctors leave me with the impression that they still don't quite know what to do with me.By profession I am a nurse but had never even heard of sarcoidosis and especially not neurosarcoidosis until I was diagnosed in Nov of '07. Exactly one year ago yesterday, April 28,2007, I began having fever of 101.5 & 3-4 major night sweats per night which eventually sent me to my truly wonderful PCP. Several CAT scans and many vials of blood later I found myself in the Infectious Disease Clinic at Duke where they eventually told me (again after many, many vials of blood later) they didn't know what was wrong with me. To confuse them further, my fevers had just about gone away completely and I really had no other real complaints. Because of an elevated ACE and a couple of very small but disconcerting hilar lymph nodes my PCP continued to follow me with some degree of puzzlement. He was really afraid that I had some kind of lymphoma but my symptoms didn't fit that diaganosis either. Within a couple of months, I began showing some neurological symptoms (tremors especially in my hands, balance and equilibrium issues, and vision problems) and I told myself that when someone else noticed, I would call my doctor. So, by September's end, my PCP ordered yet another CAT scan and admitted me to the Neuro Unit at Duke University Hospital. A tentative diagnosis of NS was confirmed a few weeks later by a biopsy of the lymph nodes in my chest and I was started on 60 mg of prednisone. Unfortunately, within a couple of weeks I developed infection in both my pancreas and in my gallbladder so the prednisone had to be decreased to 40 mg to prepare me for surgery to remove my gallbladder and the gallstones causing all of the problems. That happened in January and all went well. Since then, I have had two MRI's. the first one (Jan '07)showed a couple of new granulomas and my doctor decreased my pred to 30 mg mainly b/c of side effects. The second (April '07)) showed no further changes. I have an appt with the neurologist at Duke next month. He has mentioned decreasing my pred to 25 and possibly adding CellCept to the mix. I haven't worked since Sept of last year mainly b/c of the continued balance issues as well as some visual problems. Currently, my biggest frustrations come from my decreased ability to think clearly and the extreme fatigue. Not to mention the difficulty in planning ahead b/c of not knowing how I will feel from day to day. I hope I haven't overstepped my bounds by unloading. Hopefully, my experience will strike a common chord with someone and help you know that you are not alone. This group is great for that.All the best to you,Sharon in NCTry to laugh every day. " A merry heart doeth good like a medicine " ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php 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

April 29, 2008

Jackie, Have a good trip, I hope all goes well. We need you too, everyone's input is so important, we are the ones basically writing the pages in the book of NS, I hope it is not genetic, but besides myself having Sarcoid, so does my Mother, Aunt, and two of my mother's 2nd cousins who live in Norway, My Mother was a nurse as I was, My Aunt I think worked for a very short time in a nursing home, maybe laundry, but she's been sick for as long as I can remember, so I have to think there is some connection there? Marla

Tracie

Are you and others saying that this sarc monster that we got might be from, or in accordance with, working in the medical field. I was an CNA for twenty years. In nursing homes that did, and some not, allow us to do certain procedures involving medication. Also I was put into the laundry dept some days when they needed help. Could this, or the fact that the facility that I was working at last was built on a landfill. Could this all have kicked in my system to this disease? I know you don't know the answer for everything I would just like an opinion from you.

I have also heard that it may be with us from birth and it takes something and sometime to kick in. Another theory is that it is heredity in families. Can you add to that? I have 2 children in the medical field.

Thank you for any help you may be able to give me. In favor of it or not.

I do have some good news. We are taking the Amtrax to Devils Lake tomorrow. That is North Dakota. We want to see how I do on the train because we want to go west and back through the Canadian Rockies. So this is a test. Wish me luck.

In case you all didn't know I need you all. Someone understands mostly what is going on with us. I thank God for you all.

Jackie

Be well and happy.

Re: Good morning all............It's a beautiful morning here in NC after two days of much-needed rain. I haven't posted often but I've learned so much from this group since I discovered it a couple of months ago. Welcome to all who have recently joined and my sympathies that you had to search for us. If you care to know any more, here is my story. I'm curious to know how common my course has been since my doctors leave me with the impression that they still don't quite know what to do with me.By profession I am a nurse but had never even heard of sarcoidosis and especially not neurosarcoidosis until I was diagnosed in Nov of '07. Exactly one year ago yesterday, April 28,2007, I began having fever of 101.5 & 3-4 major night sweats per night which eventually sent me to my truly wonderful PCP. Several CAT scans and many vials of blood later I found myself in the Infectious Disease Clinic at Duke where they eventually told me (again after many, many vials of blood later) they didn't know what was wrong with me. To confuse them further, my fevers had just about gone away completely and I really had no other real complaints. Because of an elevated ACE and a couple of very small but disconcerting hilar lymph nodes my PCP continued to follow me with some degree of puzzlement. He was really afraid that I had some kind of lymphoma but my symptoms didn't fit that diaganosis either. Within a couple of months, I began showing some neurological symptoms (tremors especially in my hands, balance and equilibrium issues, and vision problems) and I told myself that when someone else noticed, I would call my doctor. So, by September's end, my PCP ordered yet another CAT scan and admitted me to the Neuro Unit at Duke University Hospital. A tentative diagnosis of NS was confirmed a few weeks later by a biopsy of the lymph nodes in my chest and I was started on 60 mg of prednisone. Unfortunately, within a couple of weeks I developed infection in both my pancreas and in my gallbladder so the prednisone had to be decreased to 40 mg to prepare me for surgery to remove my gallbladder and the gallstones causing all of the problems. That happened in January and all went well. Since then, I have had two MRI's. the first one (Jan '07)showed a couple of new granulomas and my doctor decreased my pred to 30 mg mainly b/c of side effects. The second (April '07)) showed no further changes. I have an appt with the neurologist at Duke next month. He has mentioned decreasing my pred to 25 and possibly adding CellCept to the mix. I haven't worked since Sept of last year mainly b/c of the continued balance issues as well as some visual problems. Currently, my biggest frustrations come from my decreased ability to think clearly and the extreme fatigue. Not to mention the difficulty in planning ahead b/c of not knowing how I will feel from day to day. I hope I haven't overstepped my bounds by unloading. Hopefully, my experience will strike a common chord with someone and help you know that you are not alone. This group is great for that.All the best to you,Sharon in NCTry to laugh every day. " A merry heart doeth good like a medicine " ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php 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

April 29, 2008

Tracie

Are you and others saying that this sarc monster that we got might be from, or in accordance with, working in the medical field. I was an CNA for twenty years. In nursing homes that did, and some not, allow us to do certain procedures involving medication. Also I was put into the laundry dept some days when they needed help. Could this, or the fact that the facility that I was working at last was built on a landfill. Could this all have kicked in my system to this disease? I know you don't know the answer for everything I would just like an opinion from you.

I have also heard that it may be with us from birth and it takes something and sometime to kick in. Another theory is that it is heredity in families. Can you add to that? I have 2 children in the medical field.

Thank you for any help you may be able to give me. In favor of it or not.

I do have some good news. We are taking the Amtrax to Devils Lake tomorrow. That is North Dakota. We want to see how I do on the train because we want to go west and back through the Canadian Rockies. So this is a test. Wish me luck.

In case you all didn't know I need you all. Someone understands mostly what is going on with us. I thank God for you all.

Jackie

Be well and happy.

Re: Good morning all............It's a beautiful morning here in NC after two days of much-needed rain. I haven't posted often but I've learned so much from this group since I discovered it a couple of months ago. Welcome to all who have recently joined and my sympathies that you had to search for us. If you care to know any more, here is my story. I'm curious to know how common my course has been since my doctors leave me with the impression that they still don't quite know what to do with me.By profession I am a nurse but had never even heard of sarcoidosis and especially not neurosarcoidosis until I was diagnosed in Nov of '07. Exactly one year ago yesterday, April 28,2007, I began having fever of 101.5 & 3-4 major night sweats per night which eventually sent me to my truly wonderful PCP. Several CAT scans and many vials of blood later I found myself in the Infectious Disease Clinic at Duke where they eventually told me (again after many, many vials of blood later) they didn't know what was wrong with me. To confuse them further, my fevers had just about gone away completely and I really had no other real complaints. Because of an elevated ACE and a couple of very small but disconcerting hilar lymph nodes my PCP continued to follow me with some degree of puzzlement. He was really afraid that I had some kind of lymphoma but my symptoms didn't fit that diaganosis either. Within a couple of months, I began showing some neurological symptoms (tremors especially in my hands, balance and equilibrium issues, and vision problems) and I told myself that when someone else noticed, I would call my doctor. So, by September's end, my PCP ordered yet another CAT scan and admitted me to the Neuro Unit at Duke University Hospital. A tentative diagnosis of NS was confirmed a few weeks later by a biopsy of the lymph nodes in my chest and I was started on 60 mg of prednisone. Unfortunately, within a couple of weeks I developed infection in both my pancreas and in my gallbladder so the prednisone had to be decreased to 40 mg to prepare me for surgery to remove my gallbladder and the gallstones causing all of the problems. That happened in January and all went well. Since then, I have had two MRI's. the first one (Jan '07)showed a couple of new granulomas and my doctor decreased my pred to 30 mg mainly b/c of side effects. The second (April '07)) showed no further changes. I have an appt with the neurologist at Duke next month. He has mentioned decreasing my pred to 25 and possibly adding CellCept to the mix. I haven't worked since Sept of last year mainly b/c of the continued balance issues as well as some visual problems. Currently, my biggest frustrations come from my decreased ability to think clearly and the extreme fatigue. Not to mention the difficulty in planning ahead b/c of not knowing how I will feel from day to day. I hope I haven't overstepped my bounds by unloading. Hopefully, my experience will strike a common chord with someone and help you know that you are not alone. This group is great for that.All the best to you,Sharon in NCTry to laugh every day. "A merry heart doeth good like a medicine"------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php 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

April 29, 2008

Tracie

Are you and others saying that this sarc monster that we got might be from, or in accordance with, working in the medical field. I was an CNA for twenty years. In nursing homes that did, and some not, allow us to do certain procedures involving medication. Also I was put into the laundry dept some days when they needed help. Could this, or the fact that the facility that I was working at last was built on a landfill. Could this all have kicked in my system to this disease? I know you don't know the answer for everything I would just like an opinion from you.

I have also heard that it may be with us from birth and it takes something and sometime to kick in. Another theory is that it is heredity in families. Can you add to that? I have 2 children in the medical field.

Thank you for any help you may be able to give me. In favor of it or not.

I do have some good news. We are taking the Amtrax to Devils Lake tomorrow. That is North Dakota. We want to see how I do on the train because we want to go west and back through the Canadian Rockies. So this is a test. Wish me luck.

In case you all didn't know I need you all. Someone understands mostly what is going on with us. I thank God for you all.

Jackie

Be well and happy.

Re: Good morning all............It's a beautiful morning here in NC after two days of much-needed rain. I haven't posted often but I've learned so much from this group since I discovered it a couple of months ago. Welcome to all who have recently joined and my sympathies that you had to search for us. If you care to know any more, here is my story. I'm curious to know how common my course has been since my doctors leave me with the impression that they still don't quite know what to do with me.By profession I am a nurse but had never even heard of sarcoidosis and especially not neurosarcoidosis until I was diagnosed in Nov of '07. Exactly one year ago yesterday, April 28,2007, I began having fever of 101.5 & 3-4 major night sweats per night which eventually sent me to my truly wonderful PCP. Several CAT scans and many vials of blood later I found myself in the Infectious Disease Clinic at Duke where they eventually told me (again after many, many vials of blood later) they didn't know what was wrong with me. To confuse them further, my fevers had just about gone away completely and I really had no other real complaints. Because of an elevated ACE and a couple of very small but disconcerting hilar lymph nodes my PCP continued to follow me with some degree of puzzlement. He was really afraid that I had some kind of lymphoma but my symptoms didn't fit that diaganosis either. Within a couple of months, I began showing some neurological symptoms (tremors especially in my hands, balance and equilibrium issues, and vision problems) and I told myself that when someone else noticed, I would call my doctor. So, by September's end, my PCP ordered yet another CAT scan and admitted me to the Neuro Unit at Duke University Hospital. A tentative diagnosis of NS was confirmed a few weeks later by a biopsy of the lymph nodes in my chest and I was started on 60 mg of prednisone. Unfortunately, within a couple of weeks I developed infection in both my pancreas and in my gallbladder so the prednisone had to be decreased to 40 mg to prepare me for surgery to remove my gallbladder and the gallstones causing all of the problems. That happened in January and all went well. Since then, I have had two MRI's. the first one (Jan '07)showed a couple of new granulomas and my doctor decreased my pred to 30 mg mainly b/c of side effects. The second (April '07)) showed no further changes. I have an appt with the neurologist at Duke next month. He has mentioned decreasing my pred to 25 and possibly adding CellCept to the mix. I haven't worked since Sept of last year mainly b/c of the continued balance issues as well as some visual problems. Currently, my biggest frustrations come from my decreased ability to think clearly and the extreme fatigue. Not to mention the difficulty in planning ahead b/c of not knowing how I will feel from day to day. I hope I haven't overstepped my bounds by unloading. Hopefully, my experience will strike a common chord with someone and help you know that you are not alone. This group is great for that.All the best to you,Sharon in NCTry to laugh every day. "A merry heart doeth good like a medicine"------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php 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

April 29, 2008

Thank you for that good information or should I just say information. Keep smiling it does the heart good.

Jackie

Re: Good morning all............It's a beautiful morning here in NC after two days of much-needed rain. I haven't posted often but I've learned so much from this group since I discovered it a couple of months ago. Welcome to all who have recently joined and my sympathies that you had to search for us. If you care to know any more, here is my story. I'm curious to know how common my course has been since my doctors leave me with the impression that they still don't quite know what to do with me.By profession I am a nurse but had never even heard of sarcoidosis and especially not neurosarcoidosis until I was diagnosed in Nov of '07. Exactly one year ago yesterday, April 28,2007, I began having fever of 101.5 & 3-4 major night sweats per night which eventually sent me to my truly wonderful PCP. Several CAT scans and many vials of blood later I found myself in the Infectious Disease Clinic at Duke where they eventually told me (again after many, many vials of blood later) they didn't know what was wrong with me. To confuse them further, my fevers had just about gone away completely and I really had no other real complaints. Because of an elevated ACE and a couple of very small but disconcerting hilar lymph nodes my PCP continued to follow me with some degree of puzzlement. He was really afraid that I had some kind of lymphoma but my symptoms didn't fit that diaganosis either. Within a couple of months, I began showing some neurological symptoms (tremors especially in my hands, balance and equilibrium issues, and vision problems) and I told myself that when someone else noticed, I would call my doctor. So, by September's end, my PCP ordered yet another CAT scan and admitted me to the Neuro Unit at Duke University Hospital. A tentative diagnosis of NS was confirmed a few weeks later by a biopsy of the lymph nodes in my chest and I was started on 60 mg of prednisone. Unfortunately, within a couple of weeks I developed infection in both my pancreas and in my gallbladder so the prednisone had to be decreased to 40 mg to prepare me for surgery to remove my gallbladder and the gallstones causing all of the problems. That happened in January and all went well. Since then, I have had two MRI's. the first one (Jan '07)showed a couple of new granulomas and my doctor decreased my pred to 30 mg mainly b/c of side effects. The second (April '07)) showed no further changes. I have an appt with the neurologist at Duke next month. He has mentioned decreasing my pred to 25 and possibly adding CellCept to the mix. I haven't worked since Sept of last year mainly b/c of the continued balance issues as well as some visual problems. Currently, my biggest frustrations come from my decreased ability to think clearly and the extreme fatigue. Not to mention the difficulty in planning ahead b/c of not knowing how I will feel from day to day. I hope I haven't overstepped my bounds by unloading. Hopefully, my experience will strike a common chord with someone and help you know that you are not alone. This group is great for that.All the best to you,Sharon in NCTry to laugh every day. "A merry heart doeth good like a medicine"------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php 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

April 29, 2008

Thank you for that good information or should I just say information. Keep smiling it does the heart good.

Jackie

Re: Good morning all............It's a beautiful morning here in NC after two days of much-needed rain. I haven't posted often but I've learned so much from this group since I discovered it a couple of months ago. Welcome to all who have recently joined and my sympathies that you had to search for us. If you care to know any more, here is my story. I'm curious to know how common my course has been since my doctors leave me with the impression that they still don't quite know what to do with me.By profession I am a nurse but had never even heard of sarcoidosis and especially not neurosarcoidosis until I was diagnosed in Nov of '07. Exactly one year ago yesterday, April 28,2007, I began having fever of 101.5 & 3-4 major night sweats per night which eventually sent me to my truly wonderful PCP. Several CAT scans and many vials of blood later I found myself in the Infectious Disease Clinic at Duke where they eventually told me (again after many, many vials of blood later) they didn't know what was wrong with me. To confuse them further, my fevers had just about gone away completely and I really had no other real complaints. Because of an elevated ACE and a couple of very small but disconcerting hilar lymph nodes my PCP continued to follow me with some degree of puzzlement. He was really afraid that I had some kind of lymphoma but my symptoms didn't fit that diaganosis either. Within a couple of months, I began showing some neurological symptoms (tremors especially in my hands, balance and equilibrium issues, and vision problems) and I told myself that when someone else noticed, I would call my doctor. So, by September's end, my PCP ordered yet another CAT scan and admitted me to the Neuro Unit at Duke University Hospital. A tentative diagnosis of NS was confirmed a few weeks later by a biopsy of the lymph nodes in my chest and I was started on 60 mg of prednisone. Unfortunately, within a couple of weeks I developed infection in both my pancreas and in my gallbladder so the prednisone had to be decreased to 40 mg to prepare me for surgery to remove my gallbladder and the gallstones causing all of the problems. That happened in January and all went well. Since then, I have had two MRI's. the first one (Jan '07)showed a couple of new granulomas and my doctor decreased my pred to 30 mg mainly b/c of side effects. The second (April '07)) showed no further changes. I have an appt with the neurologist at Duke next month. He has mentioned decreasing my pred to 25 and possibly adding CellCept to the mix. I haven't worked since Sept of last year mainly b/c of the continued balance issues as well as some visual problems. Currently, my biggest frustrations come from my decreased ability to think clearly and the extreme fatigue. Not to mention the difficulty in planning ahead b/c of not knowing how I will feel from day to day. I hope I haven't overstepped my bounds by unloading. Hopefully, my experience will strike a common chord with someone and help you know that you are not alone. This group is great for that.All the best to you,Sharon in NCTry to laugh every day. "A merry heart doeth good like a medicine"------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php 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

April 30, 2008

No one knows what causes Sarc, but it must be more than one thing---

I have NEVER worked in the medical field and I have Sarc.......some

think it has to do with living around pine trees (which I did in my early

marriage years); I have no idea what causes it but I DO believe I was

either born with it or got it at a very early age because as I look back

on my childhood and early teen years, I can see signs of it. As for

genetics, I don't have anyone in my immediate family that has Sarc.

However, I do have a very distant cousin that has it and my only sibling

(a sister) has Lupus --- which is in the same family as Sarc...........makes

you wonder, doesn't it???? Hopefully some day someone will find out

what causes it and then perhaps we can hope for a cure.

Wishing you all a happy, pain-free day.........

Hugs,

DarleneNS Co-Owner/Moderator

Re: [sPAM]Re: Re: Good morning all............

Jackie, Have a good trip, I hope all goes well. We need you too, everyone's input is so important, we are the ones basically writing the pages in the book of NS, I hope it is not genetic, but besides myself having Sarcoid, so does my Mother, Aunt, and two of my mother's 2nd cousins who live in Norway, My Mother was a nurse as I was, My Aunt I think worked for a very short time in a nursing home, maybe laundry, but she's been sick for as long as I can remember, so I have to think there is some connection there? Marla

..

April 30, 2008