Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hi Rose, I want to reach out and hug you for responding. My doctor seemed so caring the first visit---except he did not see me he sent in his intern. (which I think is sooooo wrong to do on the intial visit) The second visit I swear did not last more than 8 minutes and that is with me asking what was his criteria for DX NS. He never explained just told me he was done with me and that there was nothing else he could do. 2001 I was DX with lung biopsy. Lungs were very affected fought for three years to bring my lungs back. They are still scarred and I struggle to breathe when I am active. My lymph nodes were HUGE but they would not biopsy them...they told me that it was obvious it was in my lymph nodes. Within 3 months had facial numbness, ringing in ears, loss of hearing (has returned--but comes and goes), loss of muscle (I can not longer lift weights--I use to lift weights 3-4 times a week). Feet feel like they are burning, FATIGUE so bad that my husband will have to shake me to wake me up. I am unable to make a tight fist and when I wake up it feels like my muscles are " connecting " and I break a little sweat. I forget what I am saying and I repeat every thing. In fact that is a joke with my kids. They just laugh at me........ha ha ha ha I have to tell you all that after reading your stories and yes, some have told their stories more than once..and I love reading them. I knew the doctor was wrong. I knew I just needed to get up and walk out. THANK YOU THANK YOU I know where I am going next. You know I have doctors tell me It is all in my head (duh)--or I am depresed---or I have too much on my plate--and I want to reach across the room and pull a Kathy Bates on them. I don't care which movie scene you want to image---Fried Green Tomatoes or Misery--you know that should be our new fantasy---imaging wonderful scenes from movies we want to put our mean, ill temptered, ego inflated, uncaring, by the text book doctors in. O.K. I gave you two scenes to imagine--I have to admit-- I am feeling better already. I like the Jurassic Park scene when the dinosaur eats the lawyer--- in my movie it is a doctor. What are your scenes??? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hi Rose, I want to reach out and hug you for responding. My doctor seemed so caring the first visit---except he did not see me he sent in his intern. (which I think is sooooo wrong to do on the intial visit) The second visit I swear did not last more than 8 minutes and that is with me asking what was his criteria for DX NS. He never explained just told me he was done with me and that there was nothing else he could do. 2001 I was DX with lung biopsy. Lungs were very affected fought for three years to bring my lungs back. They are still scarred and I struggle to breathe when I am active. My lymph nodes were HUGE but they would not biopsy them...they told me that it was obvious it was in my lymph nodes. Within 3 months had facial numbness, ringing in ears, loss of hearing (has returned--but comes and goes), loss of muscle (I can not longer lift weights--I use to lift weights 3-4 times a week). Feet feel like they are burning, FATIGUE so bad that my husband will have to shake me to wake me up. I am unable to make a tight fist and when I wake up it feels like my muscles are " connecting " and I break a little sweat. I forget what I am saying and I repeat every thing. In fact that is a joke with my kids. They just laugh at me........ha ha ha ha I have to tell you all that after reading your stories and yes, some have told their stories more than once..and I love reading them. I knew the doctor was wrong. I knew I just needed to get up and walk out. THANK YOU THANK YOU I know where I am going next. You know I have doctors tell me It is all in my head (duh)--or I am depresed---or I have too much on my plate--and I want to reach across the room and pull a Kathy Bates on them. I don't care which movie scene you want to image---Fried Green Tomatoes or Misery--you know that should be our new fantasy---imaging wonderful scenes from movies we want to put our mean, ill temptered, ego inflated, uncaring, by the text book doctors in. O.K. I gave you two scenes to imagine--I have to admit-- I am feeling better already. I like the Jurassic Park scene when the dinosaur eats the lawyer--- in my movie it is a doctor. What are your scenes??? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 How about Hannibal? We can serve them all up a steaming hot plate of their own brains! Sometimes they aren't using them anyway! grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 How about Hannibal? We can serve them all up a steaming hot plate of their own brains! Sometimes they aren't using them anyway! grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 , you are so silly. "Sometimes they aren't using them. . ." Are they ever using them? I have just got to find that doctor joke. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: my NS dx storyDate: Tue, 21 Feb 2006 20:54:39 -0800 (PST)How about Hannibal? We can serve them all up asteaming hot plate of their own brains! Sometimes theyaren't using them anyway!grannylunatic@...__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Rose Are they using a piece of the brain when they sign the prescription for the drugs WE suggest? grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Rose, I know this wasn't for me but I have to say I am going to print this out and send to my docs. You have pretty much the exact symptomology that I have. All tests are normal. I have had a positive ACE and oligloconal bands on my first LP. 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. But I do. This is the one thing that is keeping my spirits kind of down these days. No one will take this crap seriously enough to treat me for anything. AAAAAhhhhhh! This is bull pucky. (I am keeping it clean for the new folks). Rose, thanks for posting your story. Maybe my docs will take a look at it and think, hmmm....maybe she can have a rare disease? You think? Whoo - I feel much better. Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 , Don't forget the nice chianti! Terri G. > > > How about Hannibal? We can serve them all up a > steaming hot plate of their own brains! Sometimes they > aren't using them anyway! > > grannylunatic@... > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 , I forgot the fava beans - Terri G. > > > How about Hannibal? We can serve them all up a > steaming hot plate of their own brains! Sometimes they > aren't using them anyway! > > grannylunatic@... > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 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. My hilar nodes have been prominent ever since I got sick with this disease 15 yrs ago. They aren't going to go away-- they'll stay prominent, because the sarc has scarred them-- so unlike bronchitis inflammation, they rarely shrink back down. If you are having symptoms, shortness of breath, coughing, wheezing, tightness in your chest-- or any of the other gazillion things that happen with NS-- then your MD's need to get you on a multi-system sarc protocol. The fact that you already have had the biopsy to prove that it is sarc that hit your lungs--should be a HUGE clue that the body pain (arthralgias), dementias- short term memory issues, chronic fatigue, vision stuff-- is all symptoms of active sarc. My lungs are not currently a problem, but the body and brain problems are. So we treat those issues-- and it's the same medication that they'd use if I had active pulmonary sarc-- and hope that the lungs don't flare. (Basically, as long as I don't get sick with a virus or respiratory infection--my lungs stay status quo-- my diffusion is stuck at 93%--and drops when I exercise or get sick.) My lung volume is down to only 60% of normal-- so I have lost 40% of my lungs--and that 60% of my lungs is functioning -processing-- the air I breath in- at 93% effectiveness. so any small problem, puts me back on oxygen immediatley. Your pulmonologist isn't up to date on what happens when sarc hits more than one body system, and probably doesn't want to know-- after all she's just "lungs"-- yet you are in trouble with the progression of this disease-- since it's effecting other body systems. I know I'm not as clear as I want to be-- but you need MD's that will look and learn about multi-system sarcoidosis. Blessings, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 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. My hilar nodes have been prominent ever since I got sick with this disease 15 yrs ago. They aren't going to go away-- they'll stay prominent, because the sarc has scarred them-- so unlike bronchitis inflammation, they rarely shrink back down. If you are having symptoms, shortness of breath, coughing, wheezing, tightness in your chest-- or any of the other gazillion things that happen with NS-- then your MD's need to get you on a multi-system sarc protocol. The fact that you already have had the biopsy to prove that it is sarc that hit your lungs--should be a HUGE clue that the body pain (arthralgias), dementias- short term memory issues, chronic fatigue, vision stuff-- is all symptoms of active sarc. My lungs are not currently a problem, but the body and brain problems are. So we treat those issues-- and it's the same medication that they'd use if I had active pulmonary sarc-- and hope that the lungs don't flare. (Basically, as long as I don't get sick with a virus or respiratory infection--my lungs stay status quo-- my diffusion is stuck at 93%--and drops when I exercise or get sick.) My lung volume is down to only 60% of normal-- so I have lost 40% of my lungs--and that 60% of my lungs is functioning -processing-- the air I breath in- at 93% effectiveness. so any small problem, puts me back on oxygen immediatley. Your pulmonologist isn't up to date on what happens when sarc hits more than one body system, and probably doesn't want to know-- after all she's just "lungs"-- yet you are in trouble with the progression of this disease-- since it's effecting other body systems. I know I'm not as clear as I want to be-- but you need MD's that will look and learn about multi-system sarcoidosis. Blessings, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 The yoga sounds great. Decades ago, when I was young LOL, I used to watch a PBS program that showed you how to do the stretches & moves. LOL I gave it a whirl but I was a clumsy fatty then too. I had a tape for exercises in a chair or holding on to one but can't find it. This is how I end up with 5 pair of nail clippers & 6 hairbrushes. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 The yoga sounds great. Decades ago, when I was young LOL, I used to watch a PBS program that showed you how to do the stretches & moves. LOL I gave it a whirl but I was a clumsy fatty then too. I had a tape for exercises in a chair or holding on to one but can't find it. This is how I end up with 5 pair of nail clippers & 6 hairbrushes. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 The yoga sounds great. Decades ago, when I was young LOL, I used to watch a PBS program that showed you how to do the stretches & moves. LOL I gave it a whirl but I was a clumsy fatty then too. I had a tape for exercises in a chair or holding on to one but can't find it. This is how I end up with 5 pair of nail clippers & 6 hairbrushes. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Debbie, Thanks for the encouragement. I really felt the after effects of the Yoga yesterday but I feel better today. I want to force myself also, if nothing else but for the stress relief and diversion from being sick. Take care of yourself. Terri G. > > > > In a message dated 2/22/06 6:06:11 AM Pacific Standard Time, > > mosaicgirl1@ writes: > > > > > > > . 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 > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Debbie, Thanks for the encouragement. I really felt the after effects of the Yoga yesterday but I feel better today. I want to force myself also, if nothing else but for the stress relief and diversion from being sick. Take care of yourself. Terri G. > > > > In a message dated 2/22/06 6:06:11 AM Pacific Standard Time, > > mosaicgirl1@ writes: > > > > > > > . 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 > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Tracie, Thanks for your advice. I know that you are really sick right now and it takes a lot for you to answer. Unfortunately, they did not do a biopsy. The hilar node that is the biggest is in an area that is too risky to try to get to. It would take a thoracotomy to get to it, then it is near a major vessel and major nerve. So for now, biopsy of the node is out. I just don't know what to do at this point. My next test is the neuropsych next month. I only hope that I am really "out of it" when they do it. My friend who has been in Spain for the last 2 1/2 years, stayed with me recently, and was really surprised at my cognitive status. She was a corpsman in the Navy and I was a civilian at the Naval Hospital in Portsmouth. She couldn't believe that I was so "out of it" . She just was speechless at the decline that I have had. Tracie, I will be praying for you to come out of this flare. Be sure to take care of yourself and get better soon. Terri G. >> > > > > 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.> > My hilar nodes have been prominent ever since I got sick with this disease 15 > yrs ago. They aren't going to go away-- they'll stay prominent, because the > sarc has scarred them-- so unlike bronchitis inflammation, they rarely shrink > back down. > If you are having symptoms, shortness of breath, coughing, wheezing, > tightness in your chest-- or any of the other gazillion things that happen with NS-- > then your MD's need to get you on a multi-system sarc protocol.> The fact that you already have had the biopsy to prove that it is sarc that > hit your lungs--should be a HUGE clue that the body pain (arthralgias), > dementias- short term memory issues, chronic fatigue, vision stuff-- is all symptoms > of active sarc. > My lungs are not currently a problem, but the body and brain problems are. > So we treat those issues-- and it's the same medication that they'd use if I > had active pulmonary sarc-- and hope that the lungs don't flare. (Basically, as > long as I don't get sick with a virus or respiratory infection--my lungs stay > status quo-- my diffusion is stuck at 93%--and drops when I exercise or get > sick.)> My lung volume is down to only 60% of normal-- so I have lost 40% of my > lungs--and that 60% of my lungs is functioning -processing-- the air I breath in- > at 93% effectiveness. so any small problem, puts me back on oxygen > immediatley. > Your pulmonologist isn't up to date on what happens when sarc hits more than > one body system, and probably doesn't want to know-- after all she's just > "lungs"-- yet you are in trouble with the progression of this disease-- since it's > effecting other body systems.> > I know I'm not as clear as I want to be-- but you need MD's that will look > and learn about multi-system sarcoidosis. > > Blessings,> Tracie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Tracie, Thanks for your advice. I know that you are really sick right now and it takes a lot for you to answer. Unfortunately, they did not do a biopsy. The hilar node that is the biggest is in an area that is too risky to try to get to. It would take a thoracotomy to get to it, then it is near a major vessel and major nerve. So for now, biopsy of the node is out. I just don't know what to do at this point. My next test is the neuropsych next month. I only hope that I am really "out of it" when they do it. My friend who has been in Spain for the last 2 1/2 years, stayed with me recently, and was really surprised at my cognitive status. She was a corpsman in the Navy and I was a civilian at the Naval Hospital in Portsmouth. She couldn't believe that I was so "out of it" . She just was speechless at the decline that I have had. Tracie, I will be praying for you to come out of this flare. Be sure to take care of yourself and get better soon. Terri G. >> > > > > 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.> > My hilar nodes have been prominent ever since I got sick with this disease 15 > yrs ago. They aren't going to go away-- they'll stay prominent, because the > sarc has scarred them-- so unlike bronchitis inflammation, they rarely shrink > back down. > If you are having symptoms, shortness of breath, coughing, wheezing, > tightness in your chest-- or any of the other gazillion things that happen with NS-- > then your MD's need to get you on a multi-system sarc protocol.> The fact that you already have had the biopsy to prove that it is sarc that > hit your lungs--should be a HUGE clue that the body pain (arthralgias), > dementias- short term memory issues, chronic fatigue, vision stuff-- is all symptoms > of active sarc. > My lungs are not currently a problem, but the body and brain problems are. > So we treat those issues-- and it's the same medication that they'd use if I > had active pulmonary sarc-- and hope that the lungs don't flare. (Basically, as > long as I don't get sick with a virus or respiratory infection--my lungs stay > status quo-- my diffusion is stuck at 93%--and drops when I exercise or get > sick.)> My lung volume is down to only 60% of normal-- so I have lost 40% of my > lungs--and that 60% of my lungs is functioning -processing-- the air I breath in- > at 93% effectiveness. so any small problem, puts me back on oxygen > immediatley. > Your pulmonologist isn't up to date on what happens when sarc hits more than > one body system, and probably doesn't want to know-- after all she's just > "lungs"-- yet you are in trouble with the progression of this disease-- since it's > effecting other body systems.> > I know I'm not as clear as I want to be-- but you need MD's that will look > and learn about multi-system sarcoidosis. > > Blessings,> Tracie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Tracie, Thanks for your advice. I know that you are really sick right now and it takes a lot for you to answer. Unfortunately, they did not do a biopsy. The hilar node that is the biggest is in an area that is too risky to try to get to. It would take a thoracotomy to get to it, then it is near a major vessel and major nerve. So for now, biopsy of the node is out. I just don't know what to do at this point. My next test is the neuropsych next month. I only hope that I am really "out of it" when they do it. My friend who has been in Spain for the last 2 1/2 years, stayed with me recently, and was really surprised at my cognitive status. She was a corpsman in the Navy and I was a civilian at the Naval Hospital in Portsmouth. She couldn't believe that I was so "out of it" . She just was speechless at the decline that I have had. Tracie, I will be praying for you to come out of this flare. Be sure to take care of yourself and get better soon. Terri G. >> > > > > 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.> > My hilar nodes have been prominent ever since I got sick with this disease 15 > yrs ago. They aren't going to go away-- they'll stay prominent, because the > sarc has scarred them-- so unlike bronchitis inflammation, they rarely shrink > back down. > If you are having symptoms, shortness of breath, coughing, wheezing, > tightness in your chest-- or any of the other gazillion things that happen with NS-- > then your MD's need to get you on a multi-system sarc protocol.> The fact that you already have had the biopsy to prove that it is sarc that > hit your lungs--should be a HUGE clue that the body pain (arthralgias), > dementias- short term memory issues, chronic fatigue, vision stuff-- is all symptoms > of active sarc. > My lungs are not currently a problem, but the body and brain problems are. > So we treat those issues-- and it's the same medication that they'd use if I > had active pulmonary sarc-- and hope that the lungs don't flare. (Basically, as > long as I don't get sick with a virus or respiratory infection--my lungs stay > status quo-- my diffusion is stuck at 93%--and drops when I exercise or get > sick.)> My lung volume is down to only 60% of normal-- so I have lost 40% of my > lungs--and that 60% of my lungs is functioning -processing-- the air I breath in- > at 93% effectiveness. so any small problem, puts me back on oxygen > immediatley. > Your pulmonologist isn't up to date on what happens when sarc hits more than > one body system, and probably doesn't want to know-- after all she's just > "lungs"-- yet you are in trouble with the progression of this disease-- since it's > effecting other body systems.> > I know I'm not as clear as I want to be-- but you need MD's that will look > and learn about multi-system sarcoidosis. > > Blessings,> Tracie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 , You can go to yogajournal.com (unless you misplace your computer - hee hee) and get info on Yoga that you might be able to do. Remember no headstands ok? Just take what you can use and print it out. Have fun. Terri G. >> The yoga sounds great. Decades ago, when I was young> LOL, I used to watch a PBS program that showed you how> to do the stretches & moves. LOL I gave it a whirl but> I was a clumsy fatty then too. I had a tape for> exercises in a chair or holding on to one but can't> find it. This is how I end up with 5 pair of nail> clippers & 6 hairbrushes.> > > grannylunatic@...> > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 , You can go to yogajournal.com (unless you misplace your computer - hee hee) and get info on Yoga that you might be able to do. Remember no headstands ok? Just take what you can use and print it out. Have fun. Terri G. >> The yoga sounds great. Decades ago, when I was young> LOL, I used to watch a PBS program that showed you how> to do the stretches & moves. LOL I gave it a whirl but> I was a clumsy fatty then too. I had a tape for> exercises in a chair or holding on to one but can't> find it. This is how I end up with 5 pair of nail> clippers & 6 hairbrushes.> > > grannylunatic@...> > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Hi Jeanna, Yes, I do remember you. Last time I knew you were very sick indeed. I am glad to hear you are doing better. It's good to hear that your doctors have you on the right meds. You are right about the communication too. You do have to keep the lines of communication open with your doctors and be very aggressive to be heard. That's the only way to get anywhere, I know from experience also. We are all here for you too whenever you need us for support. Hope you are feeling better. Hugs, DebbieJeanna Flowers wrote: 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. >> In a message dated 2/22/06 6:06:11 AM Pacific Standard Time, > mosaicgirl1@... writes:> > > > . 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. ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Thanks for your advice. I know that you are really sick right now and it takes a lot for you to answer. Unfortunately, they did not do a biopsy. The hilar node that is the biggest is in an area that is too risky to try to get to. It would take a thoracotomy to get to it, then it is near a major vessel and major nerve. So for now, biopsy of the node is out. Did your pulmonologist do a bronchoscopy? If not, I'd be requesting one. When I was first dx with sarc, it started as bilateral iritis (inflammation of the iris' in both eyes--and I couldn't breath. The first test the pulm did was the bronchoscopy--he thought from the xray that I had an 80% chance of lung cancer. I'd just turned 34--so that was sucky. My son was 7. But it was with the bronch that they were able to check both the lungs and the nodes all around my lungs--and we got way too many biopsies. All positive for sarc. Since you're having breathing difficulties--she if she'll budge on this. It would make your life getting this dx so much easier, and it's not a bad test to have done--Versed is great! Hugs, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Jeanna, My name is Terri e and I justed wanted to say Hi. You will see me here and there. Glad you are back. Terri > > > > In a message dated 2/22/06 6:06:11 AM Pacific Standard Time, > > mosaicgirl1@ writes: > > > > > > > . 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) with > PhotoMail - it's free and works with Yahoo! Mail. > > > > --------------------------------- > Yahoo! Mail > Use Photomail to share photos without annoying attachments. > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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