Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Welcome to the group Loti. I too am new to the group. Joining this group has been very comforting and informative. I am glad that I found thid group and have the support and understanding of others going through the same problems. I too constantly have blurred and double vision. Driving at night is very hard. I also have optic nerve damage which has caused periphral and depth perception damage. Unfortunately the Sarc has affected my brain and eyes the most. I continue to have inflammation in my eyes and brain. Still in the beginning stages of discovering and living with this. So the drs are still in trial and error mode. To: Neurosarcoidosis Sent: Sat, January 8, 2011 6:46:58 PMSubject: Re: double vision Yes I have experienced Double vision, blurred vision & just yesterday I have been seeing things that are not there. I have had alot of memory problems as well. I am new to this group & I am so glad that I found you I started a blog today http://neurosarcgirl.blogspot.com/ as a way to use as a therapy of some sort and to help connect with others and to deal with the Neurosarc.>> HI GROUP I NEED TO KNOW IF ANY MEMBERS HAVE EVER EXPERIENCED DOUBLE VISION.I > HAVE BEEN EXPERIENCING DOUBLE VISION FOR ABOUT FIVE DAYS.I CAN'T DO ANYTHING > EXCEPT WAIT UNTIL MY VISION STRAIGHTEN ITSELF OUT WHICH TAKES ABOUT FIVE > MINUTES.A STRANGE FEELING OCCUR IN MY HEAD.I AM AFRAID OF IT HAPPENING WHILE I > AM DRIVING.IT HAPPENED YESTERDAY WHILE MY HUSBAND WAS DRIVING US HOME.I HAVE > NEUROSARCOIDOSIS ,LUNG SARCOID,SARCOID IN MY EYES AND IN MY BONES.THANKS IN > ADVANCE IF ANYONE CAN HELP.I WILL SEE MY NEUROLOGIST THIS WEEK.> > > HELEN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2011 Report Share Posted January 10, 2011 Welcome to the group, you can find a lot of information here, and support, sorry I'm 2 days out on this email, but it's cold now, and I have a lot more pain, and don't get to the computer as much as I'd like to. I don't have much trouble with my eyes, my biggest issue is Neuro, I have trouble walking, and processing words, when I'm tired I sometimes don't even make sense. I am on Remicade and have been for 2 1/2 years, and it has been a very good treatment for me, I am also on Methotrexate, Plaquanil, and other drugs to treat symptoms, and side effects. I would bring up Remicade with your Doctors. Again, Welcome, were glad you found us, and sorry you had to. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Welcome to the group Loti. I too am new to the group. Joining this group has been very comforting and informative. I am glad that I found thid group and have the support and understanding of others going through the same problems. I too constantly have blurred and double vision. Driving at night is very hard. I also have optic nerve damage which has caused periphral and depth perception damage. Unfortunately the Sarc has affected my brain and eyes the most. I continue to have inflammation in my eyes and brain. Still in the beginning stages of discovering and living with this. So the drs are still in trial and error mode. To: Neurosarcoidosis Sent: Sat, January 8, 2011 6:46:58 PMSubject: Re: double vision Yes I have experienced Double vision, blurred vision & just yesterday I have been seeing things that are not there. I have had alot of memory problems as well. I am new to this group & I am so glad that I found you I started a blog today http://neurosarcgirl.blogspot.com/ as a way to use as a therapy of some sort and to help connect with others and to deal with the Neurosarc. >> HI GROUP I NEED TO KNOW IF ANY MEMBERS HAVE EVER EXPERIENCED DOUBLE VISION.I > HAVE BEEN EXPERIENCING DOUBLE VISION FOR ABOUT FIVE DAYS.I CAN'T DO ANYTHING > EXCEPT WAIT UNTIL MY VISION STRAIGHTEN ITSELF OUT WHICH TAKES ABOUT FIVE > MINUTES.A STRANGE FEELING OCCUR IN MY HEAD.I AM AFRAID OF IT HAPPENING WHILE I > AM DRIVING.IT HAPPENED YESTERDAY WHILE MY HUSBAND WAS DRIVING US HOME.I HAVE > NEUROSARCOIDOSIS ,LUNG SARCOID,SARCOID IN MY EYES AND IN MY BONES.THANKS IN > ADVANCE IF ANYONE CAN HELP.I WILL SEE MY NEUROLOGIST THIS WEEK.> > > HELEN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2011 Report Share Posted January 10, 2011 Loti, welcome to the group. We are glad to meet you, although obviously regret the circumstances. i've not had time yet to check out your blog, but will try to do that soon. Where are you from? How long have you been diagnosed with NS? In this group we welcome any questions. We have lots of info in the archives & great resources in Links. There are links at the bottom of all group posts, including this one. Darlene has been working on the Archives, cleaning them up & deleting unnecessary posts. So just put in a subject & posts will come up. Some may not be pertinent, but just keep browsing through them & you'll find many answers to your questions. We are also glad to share our own knowledge & experience. Remember that the moderators are also ill & may not reply immediately. Give us a little time & repeat the request if no responses in a reasonable amount of time. Sometimes we just miss a post or forget to reply. Again, welcome! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Sat, 8 Jan 2011 23:46:58 +0000> Subject: Re: double vision> > > > > Yes I have experienced Double vision, blurred vision & just yesterday I have been seeing things that are not there. I have had alot of memory problems as well. I am new to this group & I am so glad that I found you I started a blog today http://neurosarcgirl.blogspot.com/ as a way to use as a therapy of some sort and to help connect with others and to deal with the Neurosarc.> > >> > HI GROUP I NEED TO KNOW IF ANY MEMBERS HAVE EVER EXPERIENCED DOUBLE VISION.I > > HAVE BEEN EXPERIENCING DOUBLE VISION FOR ABOUT FIVE DAYS.I CAN'T DO ANYTHING > > EXCEPT WAIT UNTIL MY VISION STRAIGHTEN ITSELF OUT WHICH TAKES ABOUT FIVE > > MINUTES.A STRANGE FEELING OCCUR IN MY HEAD.I AM AFRAID OF IT HAPPENING WHILE I > > AM DRIVING.IT HAPPENED YESTERDAY WHILE MY HUSBAND WAS DRIVING US HOME.I HAVE > > NEUROSARCOIDOSIS ,LUNG SARCOID,SARCOID IN MY EYES AND IN MY BONES.THANKS IN > > ADVANCE IF ANYONE CAN HELP.I WILL SEE MY NEUROLOGIST THIS WEEK.> > > > > > HELEN> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > 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 January 10, 2011 Report Share Posted January 10, 2011 I was diagnosed with NS just a few weeks ago December 23,2010 I have had pulmonary Sarc for about 10 years now. I live in Texas just outside of Madisonaville. I am trying to deal with everything it took the Dr's 8 months of test to finally diagnose woth NeuroSarc? Does it always take so long especially since I had already had Sarcodoisis in the lungs DX for along time? Just wondering if this is unusual for the DR's to takke so long. I started my Blog recently over the weekend as some sort of therapy to journal my experience, sympoms & feeling with NS. I want to do something in my area to bring awareness to Sarcodoisis as well so i am toying with a few ideas. I am glad that I found the group I don't feel so alone now that I know others that share my same situation. Thanks Loti Subject: RE: Re: double visionTo: neurosarcoidosis Date: Monday, January 10, 2011, 10:30 PM Loti, welcome to the group. We are glad to meet you, although obviously regret the circumstances. i've not had time yet to check out your blog, but will try to do that soon. Where are you from? How long have you been diagnosed with NS? In this group we welcome any questions. We have lots of info in the archives & great resources in Links. There are links at the bottom of all group posts, including this one. Darlene has been working on the Archives, cleaning them up & deleting unnecessary posts. So just put in a subject & posts will come up. Some may not be pertinent, but just keep browsing through them & you'll find many answers to your questions. We are also glad to share our own knowledge & experience. Remember that the moderators are also ill & may not reply immediately. Give us a little time & repeat the request if no responses in a reasonable amount of time. Sometimes we just miss a post or forget to reply. Again, welcome! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Sat, 8 Jan 2011 23:46:58 +0000> Subject: Re: double vision> > > > > Yes I have experienced Double vision, blurred vision & just yesterday I have been seeing things that are not there. I have had alot of memory problems as well. I am new to this group & I am so glad that I found you I started a blog today http://neurosarcgirl.blogspot.com/ as a way to use as a therapy of some sort and to help connect with others and to deal with the Neurosarc.> > >> > HI GROUP I NEED TO KNOW IF ANY MEMBERS HAVE EVER EXPERIENCED DOUBLE VISION.I > > HAVE BEEN EXPERIENCING DOUBLE VISION FOR ABOUT FIVE DAYS.I CAN'T DO ANYTHING > > EXCEPT WAIT UNTIL MY VISION STRAIGHTEN ITSELF OUT WHICH TAKES ABOUT FIVE > > MINUTES.A STRANGE FEELING OCCUR IN MY HEAD.I AM AFRAID OF IT HAPPENING WHILE I > > AM DRIVING.IT HAPPENED YESTERDAY WHILE MY HUSBAND WAS DRIVING US HOME.I HAVE > > NEUROSARCOIDOSIS ,LUNG SARCOID,SARCOID IN MY EYES AND IN MY BONES.THANKS IN > > ADVANCE IF ANYONE CAN HELP.I WILL SEE MY NEUROLOGIST THIS WEEK.> > > > > > HELEN> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > 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 January 10, 2011 Report Share Posted January 10, 2011 I'd think that diagnosis can take many years with neurosarcoidosis - I had a sixth nerve palsy 5 years ago, which they never figured out a cause for, and now in retrospect they think is likely to have been NS ... so I've probably had it for at least 5 years, and only got a diagnosis a few months ago. I've had non-specific neurological symptoms over that time which no-one ever took that seriously (odd nerve sensations, neuropathic pain, onycholysis, loss of sense of smell and taste, etc). It wasn't untilI lost nearly half my vision that I was admitted to hospital, and got the attention of the top immunologist in my city, and got a probable diagnosis ... I don't have any other sarcoid symptoms (that I know of - I'm having a gallium scan next week to check!). Cheers, .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > I was diagnosed with NS just a few weeks ago December 23,2010 I have had pulmonary Sarc for about 10 years now. I live in Texas just outside of Madisonaville. I am trying to deal with everything it took the Dr's 8 months of test to finally diagnose woth NeuroSarc? Does it always take so long especially since I had already had Sarcodoisis in the lungs DX for along time? Just wondering if this is unusual for the DR's to takke so long. I started my Blog recently over the weekend as some sort of therapy to journal my experience, sympoms & feeling with NS. I want to do something in my area to bring awareness to Sarcodoisis as well so i am toying with a few ideas. I am glad that I found the group I don't feel so alone now that I know others that share my same situation. > > Thanks > Loti > > > > > Subject: RE: Re: double vision > To: neurosarcoidosis > Date: Monday, January 10, 2011, 10:30 PM > > > Loti, welcome to the group. We are glad to meet you, although obviously regret the circumstances. i've not had time yet to check out your blog, but will try to do that soon. Where are you from? How long have you been diagnosed with NS? In this group we welcome any questions. We have lots of info in the archives & great resources in Links. There are links at the bottom of all group posts, including this one. Darlene has been working on the Archives, cleaning them up & deleting unnecessary posts. So just put in a subject & posts will come up. Some may not be pertinent, but just keep browsing through them & you'll find many answers to your questions. We are also glad to share our own knowledge & experience. Remember that the moderators are also ill & may not reply immediately. Give us a little time & repeat the request if no responses in a reasonable amount of time. Sometimes we just miss a post or forget to reply. Again, welcome! > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > To: Neurosarcoidosis > > From: rlmcastillo@... > > Date: Sat, 8 Jan 2011 23:46:58 +0000 > > Subject: Re: double vision > > > > > > > > > > Yes I have experienced Double vision, blurred vision & just yesterday I have been seeing things that are not there. I have had alot of memory problems as well. I am new to this group & I am so glad that I found you I started a blog today http://neurosarcgirl.blogspot.com/ as a way to use as a therapy of some sort and to help connect with others and to deal with the Neurosarc. > > > > > > > > HI GROUP I NEED TO KNOW IF ANY MEMBERS HAVE EVER EXPERIENCED DOUBLE VISION.I > > > HAVE BEEN EXPERIENCING DOUBLE VISION FOR ABOUT FIVE DAYS.I CAN'T DO ANYTHING > > > EXCEPT WAIT UNTIL MY VISION STRAIGHTEN ITSELF OUT WHICH TAKES ABOUT FIVE > > > MINUTES.A STRANGE FEELING OCCUR IN MY HEAD.I AM AFRAID OF IT HAPPENING WHILE I > > > AM DRIVING.IT HAPPENED YESTERDAY WHILE MY HUSBAND WAS DRIVING US HOME.I HAVE > > > NEUROSARCOIDOSIS ,LUNG SARCOID,SARCOID IN MY EYES AND IN MY BONES.THANKS IN > > > ADVANCE IF ANYONE CAN HELP.I WILL SEE MY NEUROLOGIST THIS WEEK. > > > > > > > > > HELEN > > > > > > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > 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 January 11, 2011 Report Share Posted January 11, 2011 It took the doctors about 6 months to finally diagnose me. They kept saying that it mimics so many other auto immune diseases. You are not alone. Welcome to the group To: Neurosarcoidosis Sent: Mon, January 10, 2011 7:48:42 PMSubject: RE: Re: double vision I was diagnosed with NS just a few weeks ago December 23,2010 I have had pulmonary Sarc for about 10 years now. I live in Texas just outside of Madisonaville. I am trying to deal with everything it took the Dr's 8 months of test to finally diagnose woth NeuroSarc? Does it always take so long especially since I had already had Sarcodoisis in the lungs DX for along time? Just wondering if this is unusual for the DR's to takke so long. I started my Blog recently over the weekend as some sort of therapy to journal my experience, sympoms & feeling with NS. I want to do something in my area to bring awareness to Sarcodoisis as well so i am toying with a few ideas. I am glad that I found the group I don't feel so alone now that I know others that share my same situation. Thanks Loti Subject: RE: Re: double visionTo: neurosarcoidosis Date: Monday, January 10, 2011, 10:30 PM Loti, welcome to the group. We are glad to meet you, although obviously regret the circumstances. i've not had time yet to check out your blog, but will try to do that soon. Where are you from? How long have you been diagnosed with NS? In this group we welcome any questions. We have lots of info in the archives & great resources in Links. There are links at the bottom of all group posts, including this one. Darlene has been working on the Archives, cleaning them up & deleting unnecessary posts. So just put in a subject & posts will come up. Some may not be pertinent, but just keep browsing through them & you'll find many answers to your questions. We are also glad to share our own knowledge & experience. Remember that the moderators are also ill & may not reply immediately. Give us a little time & repeat the request if no responses in a reasonable amount of time. Sometimes we just miss a post or forget to reply. Again, welcome! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Sat, 8 Jan 2011 23:46:58 +0000> Subject: Re: double vision> > > > > Yes I have experienced Double vision, blurred vision & just yesterday I have been seeing things that are not there. I have had alot of memory problems as well. I am new to this group & I am so glad that I found you I started a blog today http://neurosarcgirl.blogspot.com/ as a way to use as a therapy of some sort and to help connect with others and to deal with the Neurosarc.> > >> > HI GROUP I NEED TO KNOW IF ANY MEMBERS HAVE EVER EXPERIENCED DOUBLE VISION.I > > HAVE BEEN EXPERIENCING DOUBLE VISION FOR ABOUT FIVE DAYS.I CAN'T DO ANYTHING > > EXCEPT WAIT UNTIL MY VISION STRAIGHTEN ITSELF OUT WHICH TAKES ABOUT FIVE > > MINUTES.A STRANGE FEELING OCCUR IN MY HEAD.I AM AFRAID OF IT HAPPENING WHILE I > > AM DRIVING.IT HAPPENED YESTERDAY WHILE MY HUSBAND WAS DRIVING US HOME.I HAVE > > NEUROSARCOIDOSIS ,LUNG SARCOID,SARCOID IN MY EYES AND IN MY BONES.THANKS IN > > ADVANCE IF ANYONE CAN HELP.I WILL SEE MY NEUROLOGIST THIS WEEK.> > > > > > HELEN> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > 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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