Re: Re: my NS dx story

[Guest guest]

.. I have enlarged hilar nodes and have to have my third chest CT in three months. The node on the right is located in an area that is very dangerous to remove and the one of the left is not considered significant enough to deal with. But they are both still there after six months and no one feels this is significant.

One of the things with sarc is that they don't go in and do surgery to remove the granulomas. Usually, they look like "broken glass" and are so invasive that there wouldn't be any lungs left. so they stick us on prednisone and hope that they shrink--and we go away.

However, since we all show the signs of multi-system sarc and NS--it's time for the big guns.

Get out those immunosuppresants and get as healthy as you can-- it may take a new MD or two--but it's not multiple choice.

You may always have the granulomas in your lungs and lymphs-- but at least the progression can be stopped.

Hugs--and step over, that soapbox needs to be shared,

Tracie

NS Co-owner/moderator

[Guest guest]

.. I have enlarged hilar nodes and have to have my third chest CT in three months. The node on the right is located in an area that is very dangerous to remove and the one of the left is not considered significant enough to deal with. But they are both still there after six months and no one feels this is significant.

One of the things with sarc is that they don't go in and do surgery to remove the granulomas. Usually, they look like "broken glass" and are so invasive that there wouldn't be any lungs left. so they stick us on prednisone and hope that they shrink--and we go away.

However, since we all show the signs of multi-system sarc and NS--it's time for the big guns.

Get out those immunosuppresants and get as healthy as you can-- it may take a new MD or two--but it's not multiple choice.

You may always have the granulomas in your lungs and lymphs-- but at least the progression can be stopped.

Hugs--and step over, that soapbox needs to be shared,

Tracie

NS Co-owner/moderator

[Guest guest]

I was in one of those dollar stores & found Fava beans

a few years ago. I bought a can for my daughter, my

sister & myself. I tried putting mine in my bean soup

& had to pick them out. I couldn't eat them without

getting grossed out. They're big & hard not like

pintos. My other can just sits here as a threat to my

grandchildren! LOL

grannylunatic@...

__________________________________________________

[Guest guest]

Hi Debbie, I don't know if you remember me or not, because I have been off the net for so long due to having a really crummy year physically but I know what you mean especially if you have a secondary diagnosis all they every really worry about with me is the shunt but this time the neurosarcoid nearly killed me before they finally decided I had it because of it being so rare and mimic MS like they say it does but I was in a semi concious state and for awhile and really sick even forgot things about my family like my daughter getting married, my father dying in 98, and thought my husband had married someone else after us being married nearly 25 years but they finally have decided I have a complicated case of neurosarcoid,hydrocephalus,avascular necrosis,diabetes insipidus and some anemia as if that isn't enough but I was completely out of commission from September late, till basically December and finally back at home with my husband in January but I am back trying to get better

and on some better medications for controlling pain and my illness without prednisone the doctor telling me if I have even a small flair to call and we will automatically put me on a small dose of prednisone and hopefully catch it early. You just have to keep at the doctors and let them know that you have had it and not treat you like you don't know what you are talking about as they only worried about the hydrocephalus and the neurosarcoid is what nearly killed me this time before it was all over with as it works against my shunts also. I will be praying for you and when you think you have had enough just write me and I will be you sounding board. take care and like I said I will keep you in my prayers your friend always in texas jbrd0914@... is my address at yahoo, and msn is jdf0511@.... Debbie wrote: Hi Terri, I am not on any type of prednisone or immunosuppressant either. I am also in "a wait in see" mode. I know how you feel. You feel like crap, but they don't want to treat you because they don't think you are "sick enough". Then as foolish as it sounds , you feel like you want to be sicker so they will

take notice and medicate you to make you feel better. I was on methotrexate for about a year and a half but my white blood cell count got really low that s when I went on Remicade , too. They took me off both right away because my blood count. I tried Yoga for awhile then tried the Pilates too. I had DVDs at home. I just have to make myself stick with it , that's all. Well, hope you feel better soon, Hugs, Debbiemosaicgirl1 wrote: Tracie, Thanks for the info. None of my doctors will give me prednisone, methotrexate, etc. I was on it years ago - my rheumy gave it to me but they just want to keep waiting and seeing. The problem is right now I

am in a "remission" so they don't really see anything to help me with. And of course as I said no one thinks the hilar nodes are significant. I have a very good pulmonologist, but she tells me with each visit that the nodes are probably there because I have had bronchitis or a cold and they will go away. She gets one more visit - then if she doesn't do anything she's out. I don't want to get really sick but hopefully the next time I see her I will be very sick. I did make it to Yoga last night and it was wonderful. I take Hatha yoga and it is very simple and does not wear me out. The stress relief you get from Yoga is sooooo great and I recommend it to anyone who can tolerate it. Do not take any Hot Yoga or any of the classes where the Yogi tries to put you into difficult positions. Hatha Yoga is very good for people with any health problems but be sure to take water with you as with any exercise you will get hot. And

we all know how heat affects us - so hydrate before, during and after. I also will go to simple positions if I start to get overheated so that I will cool down. Well so much for the Yoga diatribe. I just cannot say enough good things about it because of it's stress relieving properties and it makes you feel good about yourself ( - this would be great for you). I also want to say in this rambling, that I appreciate all of the help everyone is giving me. I, like so many of you, had a terrible childhood and see so much of myself here. Not only does the NS info help, but knowing there are other people out there who suffer with low self-esteem, depression, etc... keeps me going. I know that I am not alone. Thanks to everyone and here's hoping for a great day for everyone. Terri G. >> > > > > . I have enlarged hilar nodes and have to have my third chest CT in three > > months. The node on the right is located in an area that is very dangerous > > to remove and the one of the left is not considered significant enough to deal > > with. But they are both still there after six months and no one feels this > > is significant. > > One of the things with sarc is that they don't go in and do surgery to remove > the granulomas. Usually, they look like "broken glass" and are so invasive > that there wouldn't be any lungs left. so they stick us on prednisone and hope > that they shrink--and we go away.> However, since we

all show the signs of multi-system sarc and NS--it's time > for the big guns.> Get out those immunosuppresants and get as healthy as you can-- it may take a > new MD or two--but it's not multiple choice. > You may always have the granulomas in your lungs and lymphs-- but at least > the progression can be stopped.> > Hugs--and step over, that soapbox needs to be shared,> Tracie> NS Co-owner/moderator> Brings words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail.

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

[Guest guest]

Hi Debbie, I don't know if you remember me or not, because I have been off the net for so long due to having a really crummy year physically but I know what you mean especially if you have a secondary diagnosis all they every really worry about with me is the shunt but this time the neurosarcoid nearly killed me before they finally decided I had it because of it being so rare and mimic MS like they say it does but I was in a semi concious state and for awhile and really sick even forgot things about my family like my daughter getting married, my father dying in 98, and thought my husband had married someone else after us being married nearly 25 years but they finally have decided I have a complicated case of neurosarcoid,hydrocephalus,avascular necrosis,diabetes insipidus and some anemia as if that isn't enough but I was completely out of commission from September late, till basically December and finally back at home with my husband in January but I am back trying to get better

and on some better medications for controlling pain and my illness without prednisone the doctor telling me if I have even a small flair to call and we will automatically put me on a small dose of prednisone and hopefully catch it early. You just have to keep at the doctors and let them know that you have had it and not treat you like you don't know what you are talking about as they only worried about the hydrocephalus and the neurosarcoid is what nearly killed me this time before it was all over with as it works against my shunts also. I will be praying for you and when you think you have had enough just write me and I will be you sounding board. take care and like I said I will keep you in my prayers your friend always in texas jbrd0914@... is my address at yahoo, and msn is jdf0511@.... Debbie wrote: Hi Terri, I am not on any type of prednisone or immunosuppressant either. I am also in "a wait in see" mode. I know how you feel. You feel like crap, but they don't want to treat you because they don't think you are "sick enough". Then as foolish as it sounds , you feel like you want to be sicker so they will

take notice and medicate you to make you feel better. I was on methotrexate for about a year and a half but my white blood cell count got really low that s when I went on Remicade , too. They took me off both right away because my blood count. I tried Yoga for awhile then tried the Pilates too. I had DVDs at home. I just have to make myself stick with it , that's all. Well, hope you feel better soon, Hugs, Debbiemosaicgirl1 wrote: Tracie, Thanks for the info. None of my doctors will give me prednisone, methotrexate, etc. I was on it years ago - my rheumy gave it to me but they just want to keep waiting and seeing. The problem is right now I

am in a "remission" so they don't really see anything to help me with. And of course as I said no one thinks the hilar nodes are significant. I have a very good pulmonologist, but she tells me with each visit that the nodes are probably there because I have had bronchitis or a cold and they will go away. She gets one more visit - then if she doesn't do anything she's out. I don't want to get really sick but hopefully the next time I see her I will be very sick. I did make it to Yoga last night and it was wonderful. I take Hatha yoga and it is very simple and does not wear me out. The stress relief you get from Yoga is sooooo great and I recommend it to anyone who can tolerate it. Do not take any Hot Yoga or any of the classes where the Yogi tries to put you into difficult positions. Hatha Yoga is very good for people with any health problems but be sure to take water with you as with any exercise you will get hot. And

we all know how heat affects us - so hydrate before, during and after. I also will go to simple positions if I start to get overheated so that I will cool down. Well so much for the Yoga diatribe. I just cannot say enough good things about it because of it's stress relieving properties and it makes you feel good about yourself ( - this would be great for you). I also want to say in this rambling, that I appreciate all of the help everyone is giving me. I, like so many of you, had a terrible childhood and see so much of myself here. Not only does the NS info help, but knowing there are other people out there who suffer with low self-esteem, depression, etc... keeps me going. I know that I am not alone. Thanks to everyone and here's hoping for a great day for everyone. Terri G. >> > > > > . I have enlarged hilar nodes and have to have my third chest CT in three > > months. The node on the right is located in an area that is very dangerous > > to remove and the one of the left is not considered significant enough to deal > > with. But they are both still there after six months and no one feels this > > is significant. > > One of the things with sarc is that they don't go in and do surgery to remove > the granulomas. Usually, they look like "broken glass" and are so invasive > that there wouldn't be any lungs left. so they stick us on prednisone and hope > that they shrink--and we go away.> However, since we

all show the signs of multi-system sarc and NS--it's time > for the big guns.> Get out those immunosuppresants and get as healthy as you can-- it may take a > new MD or two--but it's not multiple choice. > You may always have the granulomas in your lungs and lymphs-- but at least > the progression can be stopped.> > Hugs--and step over, that soapbox needs to be shared,> Tracie> NS Co-owner/moderator> Brings words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail.

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

[Guest guest]

Jeanna

grannylunatic@...

__________________________________________________

[Guest guest]

Jeanna

grannylunatic@...

__________________________________________________

[Guest guest]

Jeanna

grannylunatic@...

__________________________________________________