Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Terri, It sounds like you've got a good case of pulmonary sarcoidosis -- and for your eyes--UVEITIS or IRITIS. Get a new OPHTHALMOLOGIST-- and dump the OD. Problems with light sensitivity are serious for not only the IRITIS-- but you are extreme candidate for acute glaucoma-- and once you loose that vision-- it doesn't come back. The iris of the eye has to be able to contract quickly to adjust for light changes-- and the UVEAL is the spiderweb like structure that works in conjunction with the iris to keep the intra-ocular pressure down. Seriously, more than 70% of us end up with eye involvement-- and this is serious. We have people with all kinds of multi-system sarcoidosis-- and most of us have signs of neurosarcoidosis. The short-term memory loss, extreme bone and body pain (sarc-induced arthritis) and lung, lymph pain. There are alot more medication available-- and if we educate our MD's about them-- they will generally treat us. Most docs want to start you on Prednisone- newer studies show that more than 80% of us that have gone that route will end up with a progressive chronic course of sarc-- so in my opinion in just masks the problems, and doesn't put it into remission. Our ARCHIVES AND LINKS have 8+ yrs of information-- so we have one heck of a library. You are welcome to print out what you find there-- and take it to your MD's. The address to connect up to them is at the bottom of this and each email from the group. Welcome to the family, and don't hesitate to ask questions- we're on the same boat-- and here to help each other. Sincerely, Tracie NS Co-owner/moderator Don't even mess with the O.D. You need an MD that specializes in eye medicine. That photosensitivy is key to tell you something is wrong. --- Terri wrote: > Hey all. I am glad i found this group. I am a > 41y/o cauc female..non- > smoker. 2 years ago, after going through a year of > extensive testing > and a diagnosis of lyphoma with mets to my bones, > lungs, thyroid, and > spleen....I was finally diagnosed correctly with > Sarcoidosis. It is > not too bad, although I wheeze and get short of > breath easily..I have > about 20 masses in my lungs, mostly around my > mediastinam. > I have had serious trouble with light for about > 20 years. My eye > doctor just poo-poo's it off. > I have also been have more frequent > urinary/kidney type > symptoms...I will get horrid pain in my back for > about 6 hours, nausea, > and firey burning when i try to urinate. I was > amazed to read some of > the posts about kidney stones ect. > Anyways, I feel I am realatively healthy, I do > work 2 jobs and I am > a single mother of a 16 and 5 year old. I would > love to take any > suggestions on how to avoid becoming increasingly > sick. > > Terri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Terri, It sounds like you've got a good case of pulmonary sarcoidosis -- and for your eyes--UVEITIS or IRITIS. Get a new OPHTHALMOLOGIST-- and dump the OD. Problems with light sensitivity are serious for not only the IRITIS-- but you are extreme candidate for acute glaucoma-- and once you loose that vision-- it doesn't come back. The iris of the eye has to be able to contract quickly to adjust for light changes-- and the UVEAL is the spiderweb like structure that works in conjunction with the iris to keep the intra-ocular pressure down. Seriously, more than 70% of us end up with eye involvement-- and this is serious. We have people with all kinds of multi-system sarcoidosis-- and most of us have signs of neurosarcoidosis. The short-term memory loss, extreme bone and body pain (sarc-induced arthritis) and lung, lymph pain. There are alot more medication available-- and if we educate our MD's about them-- they will generally treat us. Most docs want to start you on Prednisone- newer studies show that more than 80% of us that have gone that route will end up with a progressive chronic course of sarc-- so in my opinion in just masks the problems, and doesn't put it into remission. Our ARCHIVES AND LINKS have 8+ yrs of information-- so we have one heck of a library. You are welcome to print out what you find there-- and take it to your MD's. The address to connect up to them is at the bottom of this and each email from the group. Welcome to the family, and don't hesitate to ask questions- we're on the same boat-- and here to help each other. Sincerely, Tracie NS Co-owner/moderator Don't even mess with the O.D. You need an MD that specializes in eye medicine. That photosensitivy is key to tell you something is wrong. --- Terri wrote: > Hey all. I am glad i found this group. I am a > 41y/o cauc female..non- > smoker. 2 years ago, after going through a year of > extensive testing > and a diagnosis of lyphoma with mets to my bones, > lungs, thyroid, and > spleen....I was finally diagnosed correctly with > Sarcoidosis. It is > not too bad, although I wheeze and get short of > breath easily..I have > about 20 masses in my lungs, mostly around my > mediastinam. > I have had serious trouble with light for about > 20 years. My eye > doctor just poo-poo's it off. > I have also been have more frequent > urinary/kidney type > symptoms...I will get horrid pain in my back for > about 6 hours, nausea, > and firey burning when i try to urinate. I was > amazed to read some of > the posts about kidney stones ect. > Anyways, I feel I am realatively healthy, I do > work 2 jobs and I am > a single mother of a 16 and 5 year old. I would > love to take any > suggestions on how to avoid becoming increasingly > sick. > > Terri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 ---Thank you so much for all the info. It is nice to finally have an information resource and people who actually care! Terri In Neurosarcoidosis , tracie feldhaus wrote: > > Terri, > It sounds like you've got a good case of pulmonary > sarcoidosis -- and for your eyes--UVEITIS or IRITIS. > Get a new OPHTHALMOLOGIST-- and dump the OD. > Problems with light sensitivity are serious for not > only the IRITIS-- but you are extreme candidate for > acute glaucoma-- and once you loose that vision-- it > doesn't come back. > The iris of the eye has to be able to contract quickly > to adjust for light changes-- and the UVEAL is the > spiderweb like structure that works in conjunction > with the iris to keep the intra-ocular pressure down. > > Seriously, more than 70% of us end up with eye > involvement-- and this is serious. > We have people with all kinds of multi-system > sarcoidosis-- and most of us have signs of > neurosarcoidosis. The short-term memory loss, extreme > bone and body pain (sarc-induced arthritis) and lung, > lymph pain. > There are alot more medication available-- and if we > educate our MD's about them-- they will generally > treat us. > Most docs want to start you on Prednisone- newer > studies show that more than 80% of us that have gone > that route will end up with a progressive chronic > course of sarc-- so in my opinion in just masks the > problems, and doesn't put it into remission. > Our ARCHIVES AND LINKS have 8+ yrs of information-- so > we have one heck of a library. You are welcome to > print out what you find there-- and take it to your > MD's. > The address to connect up to them is at the bottom of > this and each email from the group. > > Welcome to the family, and don't hesitate to ask > questions- we're on the same boat-- and here to help > each other. > > Sincerely, > Tracie > NS Co-owner/moderator > Don't even mess with the O.D. You need an MD that > specializes in eye medicine. That photosensitivy is > key to tell you something is wrong. > > --- Terri wrote: > > > Hey all. I am glad i found this group. I am a > > 41y/o cauc female..non- > > smoker. 2 years ago, after going through a year of > > extensive testing > > and a diagnosis of lyphoma with mets to my bones, > > lungs, thyroid, and > > spleen....I was finally diagnosed correctly with > > Sarcoidosis. It is > > not too bad, although I wheeze and get short of > > breath easily..I have > > about 20 masses in my lungs, mostly around my > > mediastinam. > > I have had serious trouble with light for about > > 20 years. My eye > > doctor just poo-poo's it off. > > I have also been have more frequent > > urinary/kidney type > > symptoms...I will get horrid pain in my back for > > about 6 hours, nausea, > > and firey burning when i try to urinate. I was > > amazed to read some of > > the posts about kidney stones ect. > > Anyways, I feel I am realatively healthy, I do > > work 2 jobs and I am > > a single mother of a 16 and 5 year old. I would > > love to take any > > suggestions on how to avoid becoming increasingly > > sick. > > > > Terri > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 ---Thank you so much for all the info. It is nice to finally have an information resource and people who actually care! Terri In Neurosarcoidosis , tracie feldhaus wrote: > > Terri, > It sounds like you've got a good case of pulmonary > sarcoidosis -- and for your eyes--UVEITIS or IRITIS. > Get a new OPHTHALMOLOGIST-- and dump the OD. > Problems with light sensitivity are serious for not > only the IRITIS-- but you are extreme candidate for > acute glaucoma-- and once you loose that vision-- it > doesn't come back. > The iris of the eye has to be able to contract quickly > to adjust for light changes-- and the UVEAL is the > spiderweb like structure that works in conjunction > with the iris to keep the intra-ocular pressure down. > > Seriously, more than 70% of us end up with eye > involvement-- and this is serious. > We have people with all kinds of multi-system > sarcoidosis-- and most of us have signs of > neurosarcoidosis. The short-term memory loss, extreme > bone and body pain (sarc-induced arthritis) and lung, > lymph pain. > There are alot more medication available-- and if we > educate our MD's about them-- they will generally > treat us. > Most docs want to start you on Prednisone- newer > studies show that more than 80% of us that have gone > that route will end up with a progressive chronic > course of sarc-- so in my opinion in just masks the > problems, and doesn't put it into remission. > Our ARCHIVES AND LINKS have 8+ yrs of information-- so > we have one heck of a library. You are welcome to > print out what you find there-- and take it to your > MD's. > The address to connect up to them is at the bottom of > this and each email from the group. > > Welcome to the family, and don't hesitate to ask > questions- we're on the same boat-- and here to help > each other. > > Sincerely, > Tracie > NS Co-owner/moderator > Don't even mess with the O.D. You need an MD that > specializes in eye medicine. That photosensitivy is > key to tell you something is wrong. > > --- Terri wrote: > > > Hey all. I am glad i found this group. I am a > > 41y/o cauc female..non- > > smoker. 2 years ago, after going through a year of > > extensive testing > > and a diagnosis of lyphoma with mets to my bones, > > lungs, thyroid, and > > spleen....I was finally diagnosed correctly with > > Sarcoidosis. It is > > not too bad, although I wheeze and get short of > > breath easily..I have > > about 20 masses in my lungs, mostly around my > > mediastinam. > > I have had serious trouble with light for about > > 20 years. My eye > > doctor just poo-poo's it off. > > I have also been have more frequent > > urinary/kidney type > > symptoms...I will get horrid pain in my back for > > about 6 hours, nausea, > > and firey burning when i try to urinate. I was > > amazed to read some of > > the posts about kidney stones ect. > > Anyways, I feel I am realatively healthy, I do > > work 2 jobs and I am > > a single mother of a 16 and 5 year old. I would > > love to take any > > suggestions on how to avoid becoming increasingly > > sick. > > > > Terri > > > > > Quote Link to comment Share on other sites More sharing options...
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