Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 Hello All,I don't participate much in the conversations but I get a lot of advice and really takes too long for me to write an email :-(. Anyway I was wandering if anyone knew of any other test besides the ACE I can ask the Dr for neurosarcoidosis.ThanksShyrose Keira "You cannot do a kindness too soon. because you never know how soon it will be too late." Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 Hello All,I don't participate much in the conversations but I get a lot of advice and really takes too long for me to write an email :-(. Anyway I was wandering if anyone knew of any other test besides the ACE I can ask the Dr for neurosarcoidosis.ThanksShyrose Keira "You cannot do a kindness too soon. because you never know how soon it will be too late." Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Shyrose, I don't have an answer for you but I did want to tell you and the rest of the group that my rheumy went to a sarcoid confernce awhile back and neurosarc was discussed briefly. It was discussed that the ACE can be unreliable when neurosarc is the diagnosis without sarcoid of the lung. Just an FYI. I plan on finding out more; my rheumy is going to bring the info from home and do some research for me so I will pass on anything I found out. Terri G. > > Hello All, > > I don't participate much in the conversations but I get a lot of advice and really takes too long for me to write an email :-(. Anyway I was wandering if anyone knew of any other test besides the ACE I can ask the Dr for neurosarcoidosis. > > Thanks > > Shyrose Keira > > " You cannot do a kindness too soon. because you never know how soon it will be too late. " > > > > > __________________________________________________________________ > Get a sneak peak at messages with a handy reading pane with All new Yahoo! Mail: http://ca.promos.yahoo.com/newmail/overview2/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Shyrose, I don't have an answer for you but I did want to tell you and the rest of the group that my rheumy went to a sarcoid confernce awhile back and neurosarc was discussed briefly. It was discussed that the ACE can be unreliable when neurosarc is the diagnosis without sarcoid of the lung. Just an FYI. I plan on finding out more; my rheumy is going to bring the info from home and do some research for me so I will pass on anything I found out. Terri G. > > Hello All, > > I don't participate much in the conversations but I get a lot of advice and really takes too long for me to write an email :-(. Anyway I was wandering if anyone knew of any other test besides the ACE I can ask the Dr for neurosarcoidosis. > > Thanks > > Shyrose Keira > > " You cannot do a kindness too soon. because you never know how soon it will be too late. " > > > > > __________________________________________________________________ > Get a sneak peak at messages with a handy reading pane with All new Yahoo! Mail: http://ca.promos.yahoo.com/newmail/overview2/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Hello Terri,I will be very interested to hear your your dr has to say testing for NS. Thanks.Shyrose "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: Advice Shyrose, I don't have an answer for you but I did want to tell you and the rest of the group that my rheumy went to a sarcoid confernce awhile back and neurosarc was discussed briefly. It was discussed that the ACE can be unreliable when neurosarc is the diagnosis without sarcoid of the lung. Just an FYI. I plan on finding out more; my rheumy is going to bring the info from home and do some research for me so I will pass on anything I found out. Terri G. > > Hello All, > > I don't participate much in the conversations but I get a lot of advice and really takes too long for me to write an email :-(. Anyway I was wandering if anyone knew of any other test besides the ACE I can ask the Dr for neurosarcoidosis. > > Thanks > > Shyrose Keira > > "You cannot do a kindness too soon. because you never know how soon it will be too late." > > > > > ____________ _________ _________ _________ _________ _________ _ > Get a sneak peak at messages with a handy reading pane with All new Yahoo! Mail: http://ca.promos. yahoo.com/ newmail/overview 2/ > All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Hello Terri,I will be very interested to hear your your dr has to say testing for NS. Thanks.Shyrose "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: Advice Shyrose, I don't have an answer for you but I did want to tell you and the rest of the group that my rheumy went to a sarcoid confernce awhile back and neurosarc was discussed briefly. It was discussed that the ACE can be unreliable when neurosarc is the diagnosis without sarcoid of the lung. Just an FYI. I plan on finding out more; my rheumy is going to bring the info from home and do some research for me so I will pass on anything I found out. Terri G. > > Hello All, > > I don't participate much in the conversations but I get a lot of advice and really takes too long for me to write an email :-(. Anyway I was wandering if anyone knew of any other test besides the ACE I can ask the Dr for neurosarcoidosis. > > Thanks > > Shyrose Keira > > "You cannot do a kindness too soon. because you never know how soon it will be too late." > > > > > ____________ _________ _________ _________ _________ _________ _ > Get a sneak peak at messages with a handy reading pane with All new Yahoo! Mail: http://ca.promos. yahoo.com/ newmail/overview 2/ > All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Terri, they can't biopsy the sentinel lymph node on you. This particular lymph node under the collar bone was the one they biopsied on me. It was an awful color and fell apart in the surgeons hand, he said he just knew I had cancer like they thought but it was sarc. If this lymph node is swollen it is not real bad to get too.////Connie-FLmosaicgirl1 wrote: Hey You Guys! I need some advice ladies and gents. Over two years ago, you may recall I had hilar lymphoadenopathy but the nodes disappeared after 9 months and we were not able to get a biopsy due to their location near major vessels/nerves. Back in September, I had a chest infection which two courses of antibiotics and inhalers afterward. Now once again I have had a chest infection - the first antibiotic didn't work but now I am on avelox for 1 more day. Friday I had to go get inhalers again from my primary care because of shortness of breath. I have not had a chest CT lately but think I should push for one; I don't want anymore scans but wonder if this might give us some info to get a firm diagnosis. Thanks for listening and welcome to the newbies! Terri G. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Terri, they can't biopsy the sentinel lymph node on you. This particular lymph node under the collar bone was the one they biopsied on me. It was an awful color and fell apart in the surgeons hand, he said he just knew I had cancer like they thought but it was sarc. If this lymph node is swollen it is not real bad to get too.////Connie-FLmosaicgirl1 wrote: Hey You Guys! I need some advice ladies and gents. Over two years ago, you may recall I had hilar lymphoadenopathy but the nodes disappeared after 9 months and we were not able to get a biopsy due to their location near major vessels/nerves. Back in September, I had a chest infection which two courses of antibiotics and inhalers afterward. Now once again I have had a chest infection - the first antibiotic didn't work but now I am on avelox for 1 more day. Friday I had to go get inhalers again from my primary care because of shortness of breath. I have not had a chest CT lately but think I should push for one; I don't want anymore scans but wonder if this might give us some info to get a firm diagnosis. Thanks for listening and welcome to the newbies! Terri G. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Connie, Thanks for the advice. I am sure eventually we will get one of those suckers! Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Connie, Thanks for the advice. I am sure eventually we will get one of those suckers! Terri G. Quote Link to comment Share on other sites More sharing options...
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