Re: [SPAM] Re: I am new here and new to this.

[Guest guest]

Your start of NS sounds so much like mine. I went through a couple of weeks where the Dr.s said I had a sinus infection. Things got much worse I too thought I must of had a stroke, the right side of my face just limp. My friend took me to ER and they said I had Bells and I was admitted. Wrong---I was sent home the next day with excursuses to do. I got worse it began to affect my whole right side then my left. I was rushed to the University of Wisconsin Hospital in Madison where I spent a month going through different procedures. Finally when I was unable to do anything for myself the DR.S decided I had NS. I sent to a nursing home to do what I still don't know. I went from 180 to 125 and my family was worried I was going to die. I showed them all. I got really mad and then took control of my own life. That all happened in Feb of 2006. From April 1 until Aug 1 I was in the home. With the help of a very kind and wonderful therapist I improved. The medication was a very large amount and had to be broken down over the whole day. I still take 27 pills a day. Any way Aug 1 of 06 I was sent home. I went 3 times a week to the therapy dept at the local hospital. I am taking care of myself now. I don't walk but a few feet (which I thought I would never do that again) but I am mobile and getting more independent by the week. I was so afraid I wanted to die rather than go through all of this. I am glad I chose to live. It is not like it was before NS but it is good and getting better. I have my flare ups, I once went blind for a week. High dosage of prednisone brought my site back. I guess what I am trying to say is hang in there and work hard. Don't let this rotten thing that has happened to us pull you all the way down.

This is a wonderful group to talk, cry and even vent to. We ALL listen and pray for you. The moderators are very helpful, if they don't know it they find it out. I thank them in my prayers daily. I am living a good life. I have the support of a wonderful man and I am lucky to be alive.

You take care of YOU and rest when you need to just like they say.

Praying for you to have a good life and a pain free week. ( start a week at a time. *wink*)

Jackie from beautiful Wisconsin

[sPAM] Re: I am new here and new to this.

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

[Guest guest]

Your start of NS sounds so much like mine. I went through a couple of weeks where the Dr.s said I had a sinus infection. Things got much worse I too thought I must of had a stroke, the right side of my face just limp. My friend took me to ER and they said I had Bells and I was admitted. Wrong---I was sent home the next day with excursuses to do. I got worse it began to affect my whole right side then my left. I was rushed to the University of Wisconsin Hospital in Madison where I spent a month going through different procedures. Finally when I was unable to do anything for myself the DR.S decided I had NS. I sent to a nursing home to do what I still don't know. I went from 180 to 125 and my family was worried I was going to die. I showed them all. I got really mad and then took control of my own life. That all happened in Feb of 2006. From April 1 until Aug 1 I was in the home. With the help of a very kind and wonderful therapist I improved. The medication was a very large amount and had to be broken down over the whole day. I still take 27 pills a day. Any way Aug 1 of 06 I was sent home. I went 3 times a week to the therapy dept at the local hospital. I am taking care of myself now. I don't walk but a few feet (which I thought I would never do that again) but I am mobile and getting more independent by the week. I was so afraid I wanted to die rather than go through all of this. I am glad I chose to live. It is not like it was before NS but it is good and getting better. I have my flare ups, I once went blind for a week. High dosage of prednisone brought my site back. I guess what I am trying to say is hang in there and work hard. Don't let this rotten thing that has happened to us pull you all the way down.

This is a wonderful group to talk, cry and even vent to. We ALL listen and pray for you. The moderators are very helpful, if they don't know it they find it out. I thank them in my prayers daily. I am living a good life. I have the support of a wonderful man and I am lucky to be alive.

You take care of YOU and rest when you need to just like they say.

Praying for you to have a good life and a pain free week. ( start a week at a time. *wink*)

Jackie from beautiful Wisconsin

[sPAM] Re: I am new here and new to this.

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

[Guest guest]

Jackie, Thank you for sharing a part of your experience with me. I'm glad my condition hasn't been to that extreme, and hope it doesn't. I went to see my rheumatologist last week, ans he is the 5th doctor I have seen for this. The last thing he said to me was that I needed to be realistic about my condition and quit trying to pretend that it isn't going to get worse (which I wasn't doing anyway), but then he told me I needed to make a will out. He is the 4th doctor that has mentioned that to me. I have bad anxiety to begin with, and I do not work. So, to me that's like saying "go home and don't worry about this". I am glad you are doing better, and back in your own home, again. One day at a time. I'll talk to you, again, soon. Christyjackie wrote: Your start of NS sounds so much like mine. I went through a couple of weeks where the Dr.s said I had a sinus infection. Things got much worse I too thought I must of had a stroke, the right side of my face just limp. My friend took me to ER and they said I had Bells and I was admitted. Wrong---I was sent home the next day with excursuses to do. I got worse it began to affect my whole right side then my left. I was rushed to the University of Wisconsin Hospital in Madison where I spent a month going through different procedures.

Finally when I was unable to do anything for myself the DR.S decided I had NS. I sent to a nursing home to do what I still don't know. I went from 180 to 125 and my family was worried I was going to die. I showed them all. I got really mad and then took control of my own life. That all happened in Feb of 2006. From April 1 until Aug 1 I was in the home. With the help of a very kind and wonderful therapist I improved. The medication was a very large amount and had to be broken down over the whole day. I still take 27 pills a day. Any way Aug 1 of 06 I was sent home. I went 3 times a week to the therapy dept at the local hospital. I am taking care of myself now. I don't walk but a few feet (which I thought I would never do that again) but I am mobile and getting more independent by the week. I was so afraid I wanted to die rather than go through all of this. I am glad I chose to

live. It is not like it was before NS but it is good and getting better. I have my flare ups, I once went blind for a week. High dosage of prednisone brought my site back. I guess what I am trying to say is hang in there and work hard. Don't let this rotten thing that has happened to us pull you all the way down. This is a wonderful group to talk, cry and even vent to. We ALL listen and pray for you. The moderators are very helpful, if they don't know it they find it out. I thank them in my prayers daily. I am living a good life. I have the support of a wonderful man and I am lucky to be alive. You take care of YOU and rest when you need to just like they say. Praying for you to have a good life and a pain free week. ( start a week at a

time. *wink*) Jackie from beautiful Wisconsin [sPAM] Re: I am new here and new to this. ---Thank you so much Tracie for getting back to me so soon. I have just been recently diagnosed, about 3 weeks ago, and there just seems to be sooo many

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

Tracie> NS Co-owner/moderator> --- christina wrote:> > > I would like to talk to someone about my symptoms> > and what I am going > > through. I am kindof confused and scared about what> > it is that's going > > on. Thank you.> > > >>

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Jackie, Thank you for sharing a part of your experience with me. I'm glad my condition hasn't been to that extreme, and hope it doesn't. I went to see my rheumatologist last week, ans he is the 5th doctor I have seen for this. The last thing he said to me was that I needed to be realistic about my condition and quit trying to pretend that it isn't going to get worse (which I wasn't doing anyway), but then he told me I needed to make a will out. He is the 4th doctor that has mentioned that to me. I have bad anxiety to begin with, and I do not work. So, to me that's like saying "go home and don't worry about this". I am glad you are doing better, and back in your own home, again. One day at a time. I'll talk to you, again, soon. Christyjackie wrote: Your start of NS sounds so much like mine. I went through a couple of weeks where the Dr.s said I had a sinus infection. Things got much worse I too thought I must of had a stroke, the right side of my face just limp. My friend took me to ER and they said I had Bells and I was admitted. Wrong---I was sent home the next day with excursuses to do. I got worse it began to affect my whole right side then my left. I was rushed to the University of Wisconsin Hospital in Madison where I spent a month going through different procedures.

Finally when I was unable to do anything for myself the DR.S decided I had NS. I sent to a nursing home to do what I still don't know. I went from 180 to 125 and my family was worried I was going to die. I showed them all. I got really mad and then took control of my own life. That all happened in Feb of 2006. From April 1 until Aug 1 I was in the home. With the help of a very kind and wonderful therapist I improved. The medication was a very large amount and had to be broken down over the whole day. I still take 27 pills a day. Any way Aug 1 of 06 I was sent home. I went 3 times a week to the therapy dept at the local hospital. I am taking care of myself now. I don't walk but a few feet (which I thought I would never do that again) but I am mobile and getting more independent by the week. I was so afraid I wanted to die rather than go through all of this. I am glad I chose to

live. It is not like it was before NS but it is good and getting better. I have my flare ups, I once went blind for a week. High dosage of prednisone brought my site back. I guess what I am trying to say is hang in there and work hard. Don't let this rotten thing that has happened to us pull you all the way down. This is a wonderful group to talk, cry and even vent to. We ALL listen and pray for you. The moderators are very helpful, if they don't know it they find it out. I thank them in my prayers daily. I am living a good life. I have the support of a wonderful man and I am lucky to be alive. You take care of YOU and rest when you need to just like they say. Praying for you to have a good life and a pain free week. ( start a week at a

time. *wink*) Jackie from beautiful Wisconsin [sPAM] Re: I am new here and new to this. ---Thank you so much Tracie for getting back to me so soon. I have just been recently diagnosed, about 3 weeks ago, and there just seems to be sooo many

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

Tracie> NS Co-owner/moderator> --- christina wrote:> > > I would like to talk to someone about my symptoms> > and what I am going > > through. I am kindof confused and scared about what> > it is that's going > > on. Thank you.> > > >>

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.