Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 Hello , I have been recently diagnosed as well. I am sorry to hear about the diagnosis. But know that you are not alone. This support group has been very helpful to me as well. Rose has a wealth of information and is very funny. Her posts lift my spirits when I am down. You are going through the same things that we have all gone through or are going through now. I too am on prednisone and I hate it. My face is huge and I feel bloated, insomnia, shaking and my sugar is sky high. So be careful with the carbs and keep a watch on your glucose levels. I have been on prednisone since August and I cannot wait to get off of this mess. Everybody is different and reacts different to the meds. So I cannot tell you when you will go into remission. I have been dealing with symptoms since March of 2010 before I even knew what was wrong with me. All I can say is hang in there and be encouraged. I have been experiencing bad bouts of depression and feeling like you do. So know that you are not alone. We all understand. This support groups has even helped me to understand my symptoms and assured me that I was not crazy. All of the symptoms are weird and unexplainable but to the people that have this crazy disease. Hang in there and feel free to vent and post when needed. La To: Neurosarcoidosis Sent: Tue, January 18, 2011 3:31:04 PMSubject: Re: FW: Help I have just been recently diagnosed (Jan. 6, 2011) and do not know much about this disease other than I am feeling very frustrated with all the symptoms that I am feeling and how the predezone makes me feel. This week I am feeling very sorry for myself. I really want my old life back. I am sooooo tired of being tired and bloated. I am feelng impatient of "getting better" How do you know if the medicine is not working?? How long does it take to get to remission??? I have only been on the predezone for about 11 days. My incision from my biopsy is healing well. I found this support group on a google search. I am located in Wisconsin, where are you all located?? - > > > Subject: RE: FW: Help Needed: Faces of Sarcoidosis Photographs> To: neurosarcoidosis > Date: Monday, January 17, 2011, 9:09 PM> > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > That makes two of us, La!> > > Ramblin' Rose> Moderator>  > COLTS STILL ROCK!   > > >  > > > > > To: Neurosarcoidosis > Date: Mon, 17 Jan 2011 17:55:48 -0800> Subject: Re: FW: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > Rose I just emailed it. Thanks. Hope all is well> > > > > > > To: neurosarcoidosis > Sent: Mon, January 17, 2011 8:40:33 PM> Subject: FW: Help Needed: Faces of Sarcoidosis Photographs> >  > > Sorry about the rush on this; anyone interested in participating needs to email the photo & info by this Wednesday (two days from now). Please read the following message from FSR (Foundation for Sarcoidosis Research).> > > Ramblin' Rose> Moderator>  > COLTS STILL ROCK!   > > >  > > > > Subject: Fwd: Help Needed: Faces of Sarcoidosis Photographs> Date: Mon, 17 Jan 2011 09:48:02 -0500> To: bgabrel@...; blammert@...; e.v.e.5121@...; mamadogrose@...> > > > > > > > Sent from my iPhone> > Begin forwarded message:> > > > > Date: January 16, 2011 8:28:16 PM EST> To: "RobbieD" > Subject: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > > > > > > > > > > > > >     > > > > > Dear RobbieD,> > Each February FSR plans an awareness campaign that launches at a gala benefit in Chicago. An exciting new addition this year is a professional education partnership with the American Thoracic Society. "Sarcoidosis Week at the ATS" officially launches Monday, February 7 and we will be posting details soon about activities for patients and their families during the week -- including a webinar with a sarcoidosis expert.> > Before the week launches, we need your help putting together an awareness tool for the campaign that can be used online and at our events.> > We often hear from patients who were hurt by comments along the lines of "you don't look sick." To address the serious consequences of sarcoidosis, we are asking all of you to send us photos of you (or a loved one who has passed away) and your permission to use the photo in a multi-media presentation that we are putting together.> > To participate, send an e-mail to info@... with:> > - Your name> - Your photo (digital, preferably a close up of you)> - The year you were diagnosed> - The worst symptoms you have experienced since diagnosis> > We need at least 50 photographs by Wednesday, January 19th to complete the project and hope we can count on your support. Thank you for all you do every day to raise awareness of this disease.> > Sincerely,> > Debbie Durrer> Executive Director> Foundation for Sarcoidosis Research> > > > Your Inspire message preferences · Send these to my Inspire inbox · Unsubscribe · Help> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 Hi, ! As La said, this is a place of support & information. We have over 600 members from all over the world. One of our co-owners is having computer problems & several of the moderators are struggling with their own health, so we may not always answer the posts right away. Please be patient & know that the mods & group members will respond as soon as possible. Occasionally a post gets lost in the shuffle, so if you don't get a reply in a reasonable amount of time, just post it again! I'm truly sorry that you've encountered the sarc monster, but glad that you've found this group. We will do our best to provide what you need, whether it's info, resources, support, encouragement. Do you mind a few questions? You've just been diagnosed; how long have you had symptoms? What kind of symptoms are you having? Are you seeing a neurologist? One of the most important things from the very beginning is to have a medical team that is up to date on sarcoidosis research & options for treatment. A common mistake among doctors is to just use Pred; it gets the symptoms under control, but then as you taper off, they often come roaring back, often worse than before. You need combination treatment--another drug to keep the sarc under control as you decrease the Pred. There are several options, all with potential side effects & complications. Most of us have required some experimentation to determine which combo works best for us. If you aren't already assertive, gotta learn to be! You also need to look around for at least one advocate, someone to go to appts with you & speak up for you. Even if you are pretty assertive, this can all be so overwhelming, especially when you are sick, that it's easy to just do what the docs say. BUT, and this is a very important BUT, many doctors, even neurologists, are not current on treatment & research. It's your health, your life, your future, so don't be afraid to speak up, slow things down, ask questions & get clarification if needed. Start now keeping a journal of symptoms, treatments & results, good or bad. Some people use a notebook; I keep mine on the computer & update it periodically. But I keep all the old updates & often need to refer back. I don't want to overwhelm you (probably too late for that, right?!?), so I'll post another message with some good basic info on the disease & the treatment options. Most of this info comes from a former moderator. We also have tons of info in the Archives & Links; you can access those at the bottom of all group emails, including this one. So watch for a second post, get some tea & get comfy! Ramblin' RoseModerator COLTS STILL ROCK! > To: Neurosarcoidosis > Date: Tue, 18 Jan 2011 20:31:04 +0000> Subject: Re: FW: Help> > I have just been recently diagnosed (Jan. 6, 2011) and do not know much about this disease other than I am feeling very frustrated with all the symptoms that I am feeling and how the predezone makes me feel. This week I am feeling very sorry for myself. I really want my old life back. I am sooooo tired of being tired and bloated. I am feelng impatient of "getting better" How do you know if the medicine is not working?? How long does it take to get to remission??? I have only been on the predezone for about 11 days. My incision from my biopsy is healing well. I found this support group on a google search. I am located in Wisconsin, where are you all located?? - > > > > > > > > Subject: RE: FW: Help Needed: Faces of Sarcoidosis Photographs> > To: neurosarcoidosis > > Date: Monday, January 17, 2011, 9:09 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > That makes two of us, La!> > > > > > Ramblin' Rose> > Moderator> >  > > COLTS STILL ROCK!   > > > > > >  > > > > > > > > > > To: Neurosarcoidosis > > > Date: Mon, 17 Jan 2011 17:55:48 -0800> > Subject: Re: FW: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > > > > > > > > > > > > Rose I just emailed it. Thanks. Hope all is well> > > > > > > > > > > > > > To: neurosarcoidosis > > Sent: Mon, January 17, 2011 8:40:33 PM> > Subject: FW: Help Needed: Faces of Sarcoidosis Photographs> > > >  > > > > Sorry about the rush on this; anyone interested in participating needs to email the photo & info by this Wednesday (two days from now). Please read the following message from FSR (Foundation for Sarcoidosis Research).> > > > > > Ramblin' Rose> > Moderator> >  > > COLTS STILL ROCK!   > > > > > >  > > > > > > > > > Subject: Fwd: Help Needed: Faces of Sarcoidosis Photographs> > Date: Mon, 17 Jan 2011 09:48:02 -0500> > To: bgabrel@...; blammert@...; e.v.e.5121@...; mamadogrose@...> > > > > > > > > > > > > > > > Sent from my iPhone> > > > Begin forwarded message:> > > > > > > > > > Date: January 16, 2011 8:28:16 PM EST> > To: "RobbieD" > > Subject: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >     > > > > > > > > > > Dear RobbieD,> > > > Each February FSR plans an awareness campaign that launches at a gala benefit in Chicago. An exciting new addition this year is a professional education partnership with the American Thoracic Society. "Sarcoidosis Week at the ATS" officially launches Monday, February 7 and we will be posting details soon about activities for patients and their families during the week -- including a webinar with a sarcoidosis expert.> > > > Before the week launches, we need your help putting together an awareness tool for the campaign that can be used online and at our events.> > > > We often hear from patients who were hurt by comments along the lines of "you don't look sick." To address the serious consequences of sarcoidosis, we are asking all of you to send us photos of you (or a loved one who has passed away) and your permission to use the photo in a multi-media presentation that we are putting together.> > > > To participate, send an e-mail to info@... with:> > > > - Your name> > - Your photo (digital, preferably a close up of you)> > - The year you were diagnosed> > - The worst symptoms you have experienced since diagnosis> > > > We need at least 50 photographs by Wednesday, January 19th to complete the project and hope we can count on your support. Thank you for all you do every day to raise awareness of this disease.> > > > Sincerely,> > > > Debbie Durrer> > Executive Director> > Foundation for Sarcoidosis Research> > > > > > > > Your Inspire message preferences · Send these to my Inspire inbox · Unsubscribe · Help> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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 18, 2011 Report Share Posted January 18, 2011 I'm from WI, too! been diagnosed since 1999 and i pray your road with disease goes smoother than mine has. i have had to say goodbye to my old life and readjust to my 'new normal' and it hasn't been easy. I am not one of the members with a fountain of info....and i'd suggest you ask whatever questions you have and give one of us time to answer cuz we're all sick, too. hang in there!Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: Re: FW: HelpTo: Neurosarcoidosis Date: Tuesday, January 18, 2011, 8:31 PM I have just been recently diagnosed (Jan. 6, 2011) and do not know much about this disease other than I am feeling very frustrated with all the symptoms that I am feeling and how the predezone makes me feel. This week I am feeling very sorry for myself. I really want my old life back. I am sooooo tired of being tired and bloated. I am feelng impatient of "getting better" How do you know if the medicine is not working?? How long does it take to get to remission??? I have only been on the predezone for about 11 days. My incision from my biopsy is healing well. I found this support group on a google search. I am located in Wisconsin, where are you all located?? - > > > Subject: RE: FW: Help Needed: Faces of Sarcoidosis Photographs> To: neurosarcoidosis > Date: Monday, January 17, 2011, 9:09 PM> > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > That makes two of us, La!> > > Ramblin' Rose> Moderator>  > COLTS STILL ROCK!   > > >  > > > > > To: Neurosarcoidosis > Date: Mon, 17 Jan 2011 17:55:48 -0800> Subject: Re: FW: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > Rose I just emailed it. Thanks. Hope all is well> > > > > > > To: neurosarcoidosis > Sent: Mon, January 17, 2011 8:40:33 PM> Subject: FW: Help Needed: Faces of Sarcoidosis Photographs> >  > > Sorry about the rush on this; anyone interested in participating needs to email the photo & info by this Wednesday (two days from now). Please read the following message from FSR (Foundation for Sarcoidosis Research).> > > Ramblin' Rose> Moderator>  > COLTS STILL ROCK!   > > >  > > > > Subject: Fwd: Help Needed: Faces of Sarcoidosis Photographs> Date: Mon, 17 Jan 2011 09:48:02 -0500> To: bgabrel@...; blammert@...; e.v.e.5121@...; mamadogrose@...> > > > > > > > Sent from my iPhone> > Begin forwarded message:> > > > > Date: January 16, 2011 8:28:16 PM EST> To: "RobbieD" > Subject: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > > > > > > > > > > > > >     > > > > > Dear RobbieD,> > Each February FSR plans an awareness campaign that launches at a gala benefit in Chicago. An exciting new addition this year is a professional education partnership with the American Thoracic Society. "Sarcoidosis Week at the ATS" officially launches Monday, February 7 and we will be posting details soon about activities for patients and their families during the week -- including a webinar with a sarcoidosis expert.> > Before the week launches, we need your help putting together an awareness tool for the campaign that can be used online and at our events.> > We often hear from patients who were hurt by comments along the lines of "you don't look sick." To address the serious consequences of sarcoidosis, we are asking all of you to send us photos of you (or a loved one who has passed away) and your permission to use the photo in a multi-media presentation that we are putting together.> > To participate, send an e-mail to info@... with:> > - Your name> - Your photo (digital, preferably a close up of you)> - The year you were diagnosed> - The worst symptoms you have experienced since diagnosis> > We need at least 50 photographs by Wednesday, January 19th to complete the project and hope we can count on your support. Thank you for all you do every day to raise awareness of this disease.> > Sincerely,> > Debbie Durrer> Executive Director> Foundation for Sarcoidosis Research> > > > Your Inspire message preferences · Send these to my Inspire inbox · Unsubscribe · Help>------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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 22, 2011 Report Share Posted January 22, 2011 Not long to wait. I can't remember the last time I didn't either love or hate one of the final 4 teams. Guess I'll just watch & enjoy some good football. Might be nice to not be emotionally invested! Kind of like little kids' soccer & baseball games--all the parents rooted for all the kids (at least in our league). Ramblin' RoseModerator COLTS STILL ROCK! To: Neurosarcoidosis From: dmhs1666@...Date: Fri, 21 Jan 2011 20:42:37 -0800Subject: Re: Re: FW: Help I am in Wisonsin as well. Hang in there. Go Packers. Breathing exercises help me with the pain at night Subject: Re: FW: HelpTo: Neurosarcoidosis Date: Tuesday, January 18, 2011, 8:31 PM I have just been recently diagnosed (Jan. 6, 2011) and do not know much about this disease other than I am feeling very frustrated with all the symptoms that I am feeling and how the predezone makes me feel. This week I am feeling very sorry for myself. I really want my old life back. I am sooooo tired of being tired and bloated. I am feelng impatient of "getting better" How do you know if the medicine is not working?? How long does it take to get to remission??? I have only been on the predezone for about 11 days. My incision from my biopsy is healing well. I found this support group on a google search. I am located in Wisconsin, where are you all located?? - > > > Subject: RE: FW: Help Needed: Faces of Sarcoidosis Photographs> To: neurosarcoidosis > Date: Monday, January 17, 2011, 9:09 PM> > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > That makes two of us, La!> > > Ramblin' Rose> Moderator>  > COLTS STILL ROCK!   > > >  > > > > > To: Neurosarcoidosis > Date: Mon, 17 Jan 2011 17:55:48 -0800> Subject: Re: FW: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > Rose I just emailed it. Thanks. Hope all is well> > > > > > > To: neurosarcoidosis > Sent: Mon, January 17, 2011 8:40:33 PM> Subject: FW: Help Needed: Faces of Sarcoidosis Photographs> >  > > Sorry about the rush on this; anyone interested in participating needs to email the photo & info by this Wednesday (two days from now). Please read the following message from FSR (Foundation for Sarcoidosis Research).> > > Ramblin' Rose> Moderator>  > COLTS STILL ROCK!   > > >  > > > > Subject: Fwd: Help Needed: Faces of Sarcoidosis Photographs> Date: Mon, 17 Jan 2011 09:48:02 -0500> To: bgabrel@...; blammert@...; e.v.e.5121@...; mamadogrose@...> > > > > > > > Sent from my iPhone> > Begin forwarded message:> > > > > Date: January 16, 2011 8:28:16 PM EST> To: "RobbieD" > Subject: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > > > > > > > > > > > > >     > > > > > Dear RobbieD,> > Each February FSR plans an awareness campaign that launches at a gala benefit in Chicago. An exciting new addition this year is a professional education partnership with the American Thoracic Society. "Sarcoidosis Week at the ATS" officially launches Monday, February 7 and we will be posting details soon about activities for patients and their families during the week -- including a webinar with a sarcoidosis expert.> > Before the week launches, we need your help putting together an awareness tool for the campaign that can be used online and at our events.> > We often hear from patients who were hurt by comments along the lines of "you don't look sick." To address the serious consequences of sarcoidosis, we are asking all of you to send us photos of you (or a loved one who has passed away) and your permission to use the photo in a multi-media presentation that we are putting together.> > To participate, send an e-mail to info@... with:> > - Your name> - Your photo (digital, preferably a close up of you)> - The year you were diagnosed> - The worst symptoms you have experienced since diagnosis> > We need at least 50 photographs by Wednesday, January 19th to complete the project and hope we can count on your support. Thank you for all you do every day to raise awareness of this disease.> > Sincerely,> > Debbie Durrer> Executive Director> Foundation for Sarcoidosis Research> > > > Your Inspire message preferences · Send these to my Inspire inbox · Unsubscribe · Help>------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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 24, 2011 Report Share Posted January 24, 2011 So far I don't have the breathing problems, my symptoms started with my eyes. Where are you located in WI?? Do you know of local support groups to go to?? To: Neurosarcoidosis Sent: Fri, January 21, 2011 10:42:37 PMSubject: Re: Re: FW: Help I am in Wisonsin as well. Hang in there. Go Packers. Breathing exercises help me with the pain at night Subject: Re: FW: HelpTo: Neurosarcoidosis Date: Tuesday, January 18, 2011, 8:31 PM I have just been recently diagnosed (Jan. 6, 2011) and do not know much about this disease other than I am feeling very frustrated with all the symptoms that I am feeling and how the predezone makes me feel. This week I am feeling very sorry for myself. I really want my old life back. I am sooooo tired of being tired and bloated. I am feelng impatient of "getting better" How do you know if the medicine is not working?? How long does it take to get to remission??? I have only been on the predezone for about 11 days. My incision from my biopsy is healing well. I found this support group on a google search. I am located in Wisconsin, where are you all located?? - > > > Subject: RE: FW: Help Needed: Faces of Sarcoidosis Photographs> To: neurosarcoidosis > Date: Monday, January 17, 2011, 9:09 PM> > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > That makes two of us, La!> > > Ramblin' Rose> Moderator>  > COLTS STILL ROCK!   > > >  > > > > > To: Neurosarcoidosis > Date: Mon, 17 Jan 2011 17:55:48 -0800> Subject: Re: FW: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > Rose I just emailed it. Thanks. Hope all is well> > > > > > From: Rose > To: neurosarcoidosis > Sent: Mon, January 17, 2011 8:40:33 PM> Subject: FW: Help Needed: Faces of Sarcoidosis Photographs> >  > > Sorry about the rush on this; anyone interested in participating needs to email the photo & info by this Wednesday (two days from now). Please read the following message from FSR (Foundation for Sarcoidosis Research).> > > Ramblin' Rose> Moderator>  > COLTS STILL ROCK!   > > >  > > > > Subject: Fwd: Help Needed: Faces of Sarcoidosis Photographs> Date: Mon, 17 Jan 2011 09:48:02 -0500> To: bgabrel@...; blammert@...; e.v.e.5121@...; mamadogrose@...> > > > > > > > Sent from my iPhone> > Begin forwarded message:> > > > > Date: January 16, 2011 8:28:16 PM EST> To: "RobbieD" > Subject: Help Needed: Faces of Sarcoidosis Photographs> > > > > > > > > > > > > > > > > > > > > > >     > > > > > Dear RobbieD,> > Each February FSR plans an awareness campaign that launches at a gala benefit in Chicago. An exciting new addition this year is a professional education partnership with the American Thoracic Society. "Sarcoidosis Week at the ATS" officially launches Monday, February 7 and we will be posting details soon about activities for patients and their families during the week -- including a webinar with a sarcoidosis expert.> > Before the week launches, we need your help putting together an awareness tool for the campaign that can be used online and at our events.> > We often hear from patients who were hurt by comments along the lines of "you don't look sick." To address the serious consequences of sarcoidosis, we are asking all of you to send us photos of you (or a loved one who has passed away) and your permission to use the photo in a multi-media presentation that we are putting together.> > To participate, send an e-mail to info@... with:> > - Your name> - Your photo (digital, preferably a close up of you)> - The year you were diagnosed> - The worst symptoms you have experienced since diagnosis> > We need at least 50 photographs by Wednesday, January 19th to complete the project and hope we can count on your support. Thank you for all you do every day to raise awareness of this disease.> > Sincerely,> > Debbie Durrer> Executive Director> Foundation for Sarcoidosis Research> > > > Your Inspire message preferences · Send these to my Inspire inbox · Unsubscribe · Help>------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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 24, 2011 Report Share Posted January 24, 2011 , I would have hoped for some improvement in your vision after nearly 4 weeks of Pred. Did they give you any IV steroids in the hospital, to kind of " kick things off, " so to speak? If not, maybe you need that--sometimes called a steroid burst. Marla, doesn't it have another name? , I hope weighs in here, because she's also been dealing with the eye issues & did a fantastic research job. RE: FW: Help Needed: Faces of Sarcoidosis Photographs > > > To: neurosarcoidosis > > > Date: Monday, January 17, 2011, 9:09 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > That makes two of us, La! > > > > > > > > > Ramblin' Rose > > > Moderator > > >  > > > COLTS STILL ROCK!   > > > > > > > > >  > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 Hi - don't give up, the prednisolone really should do the trick, but it isn't super quick. I had 50% vision loss, with lesions in my brain around the optic nerves too. They started me on 60 mg of Pred as well, and while I didn't think things were improving much, the monthly peripheral vision tests I (still) do did show a huge amount of improvement. It's kind of hard to tell by yourself, I find I'm not a good judge of how much vision I have, you really do need to go in for those vision tests regularly. It sounds like your 'lump' is much bigger than what I had, and that presumably means it will take longer to respond to treatment / fade away. But - for all it's HORRIBLE side effects - the prednisolone does work wonders. You just need to be patient. Don't give up, don't despair I'm a knitter, and I had to stop knitting anything complicated for a few months while my vision loss was at its worst ... I couldn't see my left hand at all, when I was knitting! But I can knit quite well again now. And I'm allowed to drive again. Are you able to access vision impaired bus passes or something like that? I was able to get free bus travel for some months when I wasn't allowed to drive - it just required a letter from a doctor saying I wasn't allowed to drive because of vision loss, and some forms at our local bus service. I've still got some vision loss, which may be permanent scarring ... my next vision test is next Monday. It's central, unfortunately, so I really notice it when reading etc, but it's only about 4% loss overall, compared to nearly 50% before. The main thing is to get a good neurologist and immunologist on your 'medical team' and work with them, follow their advice. There are medications which are less harsh than steroids, which can get the disease into remission ... methotrexate is what I'm on, and it seems to be doing the job so far. I've been on pred since October 10, and am tapering down now, I'm down to 20 mg/day, and hope to be off it entirely in another few months. I've also gained weight, which I HATE. It's the final straw, isn't it?! But i *do* have most of my vision back, which is definitely a Good Thing! I'm sure yours will improve too, even if it takes a while. While you do ned to adjust to a new " life with sarcoidosis " , and there are some things that will have to change, and things to mourn, it's not the end of the world. I've got a spare copy of Duffy's funny and uplifting book about life with neuro-sarcoidosis, if you send me your postal address I will send it to you. Cheers, ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,\ ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,. http://sutherland-studios.com.au http://www.facebook.com/pages/-Sutherland/149144697766 ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,\ ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,. > , I would have hoped for some improvement in your vision after nearly 4 weeks of Pred. Did they give you any IV steroids in the hospital, to kind of " kick things off, " so to speak? If not, maybe you need that--sometimes called a steroid burst. Marla, doesn't it have another name? , I hope weighs in here, because she's also been dealing with the eye issues & did a fantastic research job. > RE: FW: Help Needed: Faces of Sarcoidosis Photographs >>>> To: neurosarcoidosis >>>> Date: Monday, January 17, 2011, 9:09 PM >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>>  >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> That makes two of us, La! >>>> >>>> >>>> Ramblin' Rose >>>> Moderator >>>>  >>>> COLTS STILL ROCK!   >>>> >>>> >>>>  >>>> >>>> >>>> >>>> >>> > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > 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 25, 2011 Report Share Posted January 25, 2011 Thanks, . I guess I was thinking too aggressively. Re: Re: FW: Help Hi - don't give up, the prednisolone really should do the trick, but it isn't super quick. I had 50% vision loss, with lesions in my brain around the optic nerves too. They started me on 60 mg of Pred as well, and while I didn't think things were improving much, the monthly peripheral vision tests I (still) do did show a huge amount of improvement. It's kind of hard to tell by yourself, I find I'm not a good judge of how much vision I have, you really do need to go in for those vision tests regularly. It sounds like your 'lump' is much bigger than what I had, and that presumably means it will take longer to respond to treatment / fade away. But - for all it's HORRIBLE side effects - the prednisolone does work wonders. You just need to be patient. Don't give up, don't despair I'm a knitter, and I had to stop knitting anything complicated for a few months while my vision loss was at its worst ... I couldn't see my left hand at all, when I was knitting! But I can knit quite well again now. And I'm a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Thanks , I really appreciate the insight. Your right I am just feeling impatient. My next check up for my vision is on Feb 15. I don't know what the percent of vision loss it is that I have, but it feels like, I need to take my eye out and wash it off and it will be all clear. - if only you could do that I am walking straighter now with better balance. So I am glad about that. Even if I don't get the left eye back, I am glad to have the right eye with some clear vision, that is a good thing. Do you mind a few questions?? So are you on two medications now - the Predizone and the methotrexate?? Is an immunologist the same as the endocrineolgist?? Are you on a special diet also for sarcoidosis?? When they do your vision test do they dialate your eyes each time for the field vision test?? I live in a small town so we do not have a bus system, but maybe I can call the local cab company and see what they say. So far my friends have been very helpful and willing to take me around town, but if this goes on for a long time I'm sure they are going to get tired of me. I feel much better getting your email. Thank you. To: Neurosarcoidosis Sent: Mon, January 24, 2011 10:56:27 PMSubject: Re: Re: FW: Help Hi - don't give up, the prednisolone really should do the trick, but it isn't super quick. I had 50% vision loss, with lesions in my brain around the optic nerves too. They started me on 60 mg of Pred as well, and while I didn't think things were improving much, the monthly peripheral vision tests I (still) do did show a huge amount of improvement. It's kind of hard to tell by yourself, I find I'm not a good judge of how much vision I have, you really do need to go in for those vision tests regularly.It sounds like your 'lump' is much bigger than what I had, and that presumably means it will take longer to respond to treatment / fade away. But - for all it's HORRIBLE side effects - the prednisolone does work wonders. You just need to be patient. Don't give up, don't despair :)I'm a knitter, and I had to stop knitting anything complicated for a few months while my vision loss was at its worst ... I couldn't see my left hand at all, when I was knitting! But I can knit quite well again now. And I'm allowed to drive again.Are you able to access vision impaired bus passes or something like that? I was able to get free bus travel for some months when I wasn't allowed to drive - it just required a letter from a doctor saying I wasn't allowed to drive because of vision loss, and some forms at our local bus service.I've still got some vision loss, which may be permanent scarring ... my next vision test is next Monday. It's central, unfortunately, so I really notice it when reading etc, but it's only about 4% loss overall, compared to nearly 50% before. The main thing is to get a good neurologist and immunologist on your 'medical team' and work with them, follow their advice. There are medications which are less harsh than steroids, which can get the disease into remission ... methotrexate is what I'm on, and it seems to be doing the job so far. I've been on pred since October 10, and am tapering down now, I'm down to 20 mg/day, and hope to be off it entirely in another few months. I've also gained weight, which I HATE. It's the final straw, isn't it?! But i *do* have most of my vision back, which is definitely a Good Thing! I'm sure yours will improve too, even if it takes a while.While you do ned to adjust to a new "life with sarcoidosis", and there are some things that will have to change, and things to mourn, it's not the end of the world. I've got a spare copy of Duffy's funny and uplifting book about life with neuro-sarcoidosis, if you send me your postal address I will send it to you.Cheers,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.http://sutherland-studios.com.auhttp://www.facebook.com/pages/-Sutherland/149144697766.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.On 25/01/2011, at 3:29 PM, Rose wrote:> , I would have hoped for some improvement in your vision after nearly 4 weeks of Pred. Did they give you any IV steroids in the hospital, to kind of "kick things off," so to speak? If not, maybe you need that--sometimes called a steroid burst. Marla, doesn't it have another name? , I hope weighs in here, because she's also been dealing with the eye issues & did a fantastic research job. > RE: FW: Help Needed: Faces of Sarcoidosis Photographs>>>> To: neurosarcoidosis >>>> Date: Monday, January 17, 2011, 9:09 PM>>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>>  >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> That makes two of us, La!>>>> >>>> >>>> Ramblin' Rose>>>> Moderator>>>>  >>>> COLTS STILL ROCK!   >>>> >>>> >>>>  >>>> >>>> >>>> >>>> >>> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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 25, 2011 Report Share Posted January 25, 2011 said: I live in a small town so we do not have a bus system, but maybe I can call the local cab company and see what they say. So far my friends have been very helpful and willing to take me around town, but if this goes on for a long time I'm sure they are going to get tired of me. , do you have a church family? Even if you don't attend church, many congregations have members who would be glad to help someone out. Our church is small, but we provide assistance to members of the community as a service. We do not try to get them to join the church or anything like that. I know that it's hard to ask for help, especially from strangers, but you might consider it. Ramblin' RoseModerator COLTS STILL ROCK! To: Neurosarcoidosis From: precisesewing@...Date: Tue, 25 Jan 2011 19:00:10 -0800Subject: Re: Re: FW: Help Thanks , I really appreciate the insight. Your right I am just feeling impatient. My next check up for my vision is on Feb 15. I don't know what the percent of vision loss it is that I have, but it feels like, I need to take my eye out and wash it off and it will be all clear. - if only you could do that I am walking straighter now with better balance. So I am glad about that. Even if I don't get the left eye back, I am glad to have the right eye with some clear vision, that is a good thing. Do you mind a few questions?? So are you on two medications now - the Predizone and the methotrexate?? Is an immunologist the same as the endocrineolgist?? Are you on a special diet also for sarcoidosis?? When they do your vision test do they dialate your eyes each time for the field vision test?? I live in a small town so we do not have a bus system, but maybe I can call the local cab company and see what they say. So far my friends have been very helpful and willing to take me around town, but if this goes on for a long time I'm sure they are going to get tired of me. I feel much better getting your email. Thank you. To: Neurosarcoidosis Sent: Mon, January 24, 2011 10:56:27 PMSubject: Re: Re: FW: Help Hi - don't give up, the prednisolone really should do the trick, but it isn't super quick. I had 50% vision loss, with lesions in my brain around the optic nerves too. They started me on 60 mg of Pred as well, and while I didn't think things were improving much, the monthly peripheral vision tests I (still) do did show a huge amount of improvement. It's kind of hard to tell by yourself, I find I'm not a good judge of how much vision I have, you really do need to go in for those vision tests regularly.It sounds like your 'lump' is much bigger than what I had, and that presumably means it will take longer to respond to treatment / fade away. But - for all it's HORRIBLE side effects - the prednisolone does work wonders. You just need to be patient. Don't give up, don't despair :)I'm a knitter, and I had to stop knitting anything complicated for a few months while my vision loss was at its worst ... I couldn't see my left hand at all, when I was knitting! But I can knit quite well again now. And I'm allowed to drive again.Are you able to access vision impaired bus passes or something like that? I was able to get free bus travel for some months when I wasn't allowed to drive - it just required a letter from a doctor saying I wasn't allowed to drive because of vision loss, and some forms at our local bus service.I've still got some vision loss, which may be permanent scarring ... my next vision test is next Monday. It's central, unfortunately, so I really notice it when reading etc, but it's only about 4% loss overall, compared to nearly 50% before. The main thing is to get a good neurologist and immunologist on your 'medical team' and work with them, follow their advice. There are medications which are less harsh than steroids, which can get the disease into remission ... methotrexate is what I'm on, and it seems to be doing the job so far. I've been on pred since October 10, and am tapering down now, I'm down to 20 mg/day, and hope to be off it entirely in another few months. I've also gained weight, which I HATE. It's the final straw, isn't it?! But i *do* have most of my vision back, which is definitely a Good Thing! I'm sure yours will improve too, even if it takes a while.While you do ned to adjust to a new "life with sarcoidosis", and there are some things that will have to change, and things to mourn, it's not the end of the world. I've got a spare copy of Duffy's funny and uplifting book about life with neuro-sarcoidosis, if you send me your postal address I will send it to you.Cheers,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.http://sutherland-studios.com.auhttp://www.facebook.com/pages/-Sutherland/149144697766.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.On 25/01/2011, at 3:29 PM, Rose wrote:> , I would have hoped for some improvement in your vision after nearly 4 weeks of Pred. Did they give you any IV steroids in the hospital, to kind of "kick things off," so to speak? If not, maybe you need that--sometimes called a steroid burst. Marla, doesn't it have another name? , I hope weighs in here, because she's also been dealing with the eye issues & did a fantastic research job. > RE: FW: Help Needed: Faces of Sarcoidosis Photographs>>>> To: neurosarcoidosis >>>> Date: Monday, January 17, 2011, 9:09 PM>>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>>  >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> That makes two of us, La!>>>> >>>> >>>> Ramblin' Rose>>>> Moderator>>>>  >>>> COLTS STILL ROCK!   >>>> >>>> >>>>  >>>> >>>> >>>> >>>> >>> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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 25, 2011 Report Share Posted January 25, 2011 Hi , > I really appreciate the insight. You're right I am just feeling impatient. Hardly surprising! > My next check up for my vision is on Feb 15. I don't know what the percent of vision loss it is that I have, but it feels like, I need to take my eye out and wash it off and it will be all clear. - if only you could do that I know the feeling well, I keep feeling like my vision is 'cloudy', even though I've got an updated glasses prescription and all. And I still have that, even with most of my vision returned ... > I am walking straighter now with better balance. So I am glad about that. Even if I don't get the left eye back, I am glad to have the right eye with some clear vision, that is a good thing. Yes, it makes you really appreciate what vision you DO have, doesn't it?! Too bloody scary thinking about being completely blind > Do you mind a few questions?? So are you on two medications now - the Predizone and the methotrexate?? Yes, I'm on both - the methotrexate takes a while to build up, and once it's 'at strength' (after a few weeks) you can start to drop down the pred dose - which must be done very very slowly and carefully. Eventually I'll be just on the methotrexate, and then I may be able to come off that as well if I go into remission. Methotrexate, and other similar drugs, are also 'steroid sparers' which means that if you do need steroids, you can get the same effect on a lower dose, if you take the methotrexate at the same time. They 'spare' your body of the higher steroid doses. > Is an immunologist the same as the endocrineolgist?? No - I've got a neurologist who is a specialist with nerve / neurological problems, such as this sort of vision loss, and an immunologist who is a specialist in autoimmune diseases (like sarcoid, lupus, etc). An endocrinologist is someone who addresses endocrine / hormonal diseases, like type 1 diabetes (which my daughter has). > Are you on a special diet also for sarcoidosis?? No, just a healthy diet. Well, mostly healthy, LOL I cook almost all meals from scratch, and we rarely have fast food, and I generally have low fat, fair amount of veg and fruit etc. I don't have the will power to be on a very restrictive diet while dealing with my sarcoidosis and everything else, and in fact my doctors have advised against it, saying I've got enough to deal with without worrying about my weight etc. > When they do your vision test do they dialate your eyes each time for the field vision test?? They dilate my eyes, but that's for when they look at the back of the eye to see if it looks OK - for the peripheral vision test just have to wear an eye patch on the 'non-tested' eye, stick my head inside a white hemisphere, stare at the bright central light, and click a button every time I see a light flickering. If you want to see my results, you can look at my blog (http://jejunesplace.blogspot.com/2010/12/eye-exams.html) > I live in a small town so we do not have a bus system, but maybe I can call the local cab company and see what they say. So far my friends have been very helpful and willing to take me around town, but if this goes on for a long time I'm sure they are going to get tired of me. It could be worth contacting your national society for the blind (http://www.afb.org/ etc) too, they may have things like travel vouchers you're eligible for, for taxis, or something? I don't know - we have much more free public health and support in Australia than you do in the States. I know that Vision Australia provides services for people like us with low vision, as well as those who are fully blind. Worth contacting them for support!! > I feel much better getting your email. You're very welcome, I'm very glad I could be of some help Let me know if you'd like that copy of the Duffy book, you can send me your postal address to my private email (denise@...) rather than to the sarcoid group, to keep it private ... xo > Thank you. > > > > To: Neurosarcoidosis > Sent: Mon, January 24, 2011 10:56:27 PM > Subject: Re: Re: FW: Help > > > Hi - don't give up, the prednisolone really should do the trick, but it isn't super quick. I had 50% vision loss, with lesions in my brain around the optic nerves too. They started me on 60 mg of Pred as well, and while I didn't think things were improving much, the monthly peripheral vision tests I (still) do did show a huge amount of improvement. It's kind of hard to tell by yourself, I find I'm not a good judge of how much vision I have, you really do need to go in for those vision tests regularly. > > It sounds like your 'lump' is much bigger than what I had, and that presumably means it will take longer to respond to treatment / fade away. But - for all it's HORRIBLE side effects - the prednisolone does work wonders. You just need to be patient. Don't give up, don't despair > > I'm a knitter, and I had to stop knitting anything complicated for a few months while my vision loss was at its worst ... I couldn't see my left hand at all, when I was knitting! But I can knit quite well again now. And I'm allowed to drive again. > > Are you able to access vision impaired bus passes or something like that? I was able to get free bus travel for some months when I wasn't allowed to drive - it just required a letter from a doctor saying I wasn't allowed to drive because of vision loss, and some forms at our local bus service. > > I've still got some vision loss, which may be permanent scarring ... my next vision test is next Monday. It's central, unfortunately, so I really notice it when reading etc, but it's only about 4% loss overall, compared to nearly 50% before. > > The main thing is to get a good neurologist and immunologist on your 'medical team' and work with them, follow their advice. There are medications which are less harsh than steroids, which can get the disease into remission ... methotrexate is what I'm on, and it seems to be doing the job so far. I've been on pred since October 10, and am tapering down now, I'm down to 20 mg/day, and hope to be off it entirely in another few months. I've also gained weight, which I HATE. It's the final straw, isn't it?! But i *do* have most of my vision back, which is definitely a Good Thing! I'm sure yours will improve too, even if it takes a while. > > While you do ned to adjust to a new " life with sarcoidosis " , and there are some things that will have to change, and things to mourn, it's not the end of the world. I've got a spare copy of Duffy's funny and uplifting book about life with neuro-sarcoidosis, if you send me your postal address I will send it to you. > > Cheers, > > > > ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,\ ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,. > http://sutherland-studios.com.au > http://www.facebook.com/pages/-Sutherland/149144697766 > ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,\ ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,. > > > > > , I would have hoped for some improvement in your vision after nearly 4 weeks of Pred. Did they give you any IV steroids in the hospital, to kind of " kick things off, " so to speak? If not, maybe you need that--sometimes called a steroid burst. Marla, doesn't it have another name? , I hope weighs in here, because she's also been dealing with the eye issues & did a fantastic research job. > > RE: FW: Help Needed: Faces of Sarcoidosis Photographs > >>>> To: neurosarcoidosis > >>>> Date: Monday, January 17, 2011, 9:09 PM > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>>  > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> That makes two of us, La! > >>>> > >>>> > >>>> Ramblin' Rose > >>>> Moderator > >>>>  > >>>> COLTS STILL ROCK!   > >>>> > >>>> > >>>>  > >>>> > >>>> > >>>> > >>>> > >>> > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > 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 26, 2011 Report Share Posted January 26, 2011 , thanks for the excellent support you have provided . I really appreciate it & hope things continue to improve for you. Ramblin' RoseModerator COLTS STILL ROCK! > To: Neurosarcoidosis > Date: Wed, 26 Jan 2011 17:05:36 +1100> Subject: Re: Re: FW: Help> > Hi ,> > > I really appreciate the insight. You're right I am just feeling impatient. > > Hardly surprising!> > > My next check up for my vision is on Feb 15. I don't know what the percent of vision loss it is that I have, but it feels like, I need to take my eye out and wash it off and it will be all clear. - if only you could do that > > I know the feeling well, I keep feeling like my vision is 'cloudy', even though I've got an updated glasses prescription and all. And I still have that, even with most of my vision returned ...> > > I am walking straighter now with better balance. So I am glad about that. Even if I don't get the left eye back, I am glad to have the right eye with some clear vision, that is a good thing.> > Yes, it makes you really appreciate what vision you DO have, doesn't it?! Too bloody scary thinking about being completely blind > > > Do you mind a few questions?? So are you on two medications now - the Predizone and the methotrexate?? > > Yes, I'm on both - the methotrexate takes a while to build up, and once it's 'at strength' (after a few weeks) you can start to drop down the pred dose - which must be done very very slowly and carefully. Eventually I'll be just on the methotrexate, and then I may be able to come off that as well if I go into remission. Methotrexate, and other similar drugs, are also 'steroid sparers' which means that if you do need steroids, you can get the same effect on a lower dose, if you take the methotrexate at the same time. They 'spare' your body of the higher steroid doses.> > > Is an immunologist the same as the endocrineolgist??> > No - I've got a neurologist who is a specialist with nerve / neurological problems, such as this sort of vision loss, and an immunologist who is a specialist in autoimmune diseases (like sarcoid, lupus, etc). An endocrinologist is someone who addresses endocrine / hormonal diseases, like type 1 diabetes (which my daughter has).> > > Are you on a special diet also for sarcoidosis?? > > No, just a healthy diet. Well, mostly healthy, LOL I cook almost all meals from scratch, and we rarely have fast food, and I generally have low fat, fair amount of veg and fruit etc. I don't have the will power to be on a very restrictive diet while dealing with my sarcoidosis and everything else, and in fact my doctors have advised against it, saying I've got enough to deal with without worrying about my weight etc.> > > When they do your vision test do they dialate your eyes each time for the field vision test?? > > They dilate my eyes, but that's for when they look at the back of the eye to see if it looks OK - for the peripheral vision test just have to wear an eye patch on the 'non-tested' eye, stick my head inside a white hemisphere, stare at the bright central light, and click a button every time I see a light flickering. If you want to see my results, you can look at my blog (http://jejunesplace.blogspot.com/2010/12/eye-exams.html)> > > I live in a small town so we do not have a bus system, but maybe I can call the local cab company and see what they say. So far my friends have been very helpful and willing to take me around town, but if this goes on for a long time I'm sure they are going to get tired of me.> > It could be worth contacting your national society for the blind (http://www.afb.org/ etc) too, they may have things like travel vouchers you're eligible for, for taxis, or something? I don't know - we have much more free public health and support in Australia than you do in the States. I know that Vision Australia provides services for people like us with low vision, as well as those who are fully blind. Worth contacting them for support!!> > > I feel much better getting your email. > > You're very welcome, I'm very glad I could be of some help Let me know if you'd like that copy of the Duffy book, you can send me your postal address to my private email (denise@...) rather than to the sarcoid group, to keep it private ...> > xo > > > > Thank you.> > > > > > > > To: Neurosarcoidosis > > Sent: Mon, January 24, 2011 10:56:27 PM> > Subject: Re: Re: FW: Help> > > > > > Hi - don't give up, the prednisolone really should do the trick, but it isn't super quick. I had 50% vision loss, with lesions in my brain around the optic nerves too. They started me on 60 mg of Pred as well, and while I didn't think things were improving much, the monthly peripheral vision tests I (still) do did show a huge amount of improvement. It's kind of hard to tell by yourself, I find I'm not a good judge of how much vision I have, you really do need to go in for those vision tests regularly.> > > > It sounds like your 'lump' is much bigger than what I had, and that presumably means it will take longer to respond to treatment / fade away. But - for all it's HORRIBLE side effects - the prednisolone does work wonders. You just need to be patient. Don't give up, don't despair > > > > I'm a knitter, and I had to stop knitting anything complicated for a few months while my vision loss was at its worst ... I couldn't see my left hand at all, when I was knitting! But I can knit quite well again now. And I'm allowed to drive again.> > > > Are you able to access vision impaired bus passes or something like that? I was able to get free bus travel for some months when I wasn't allowed to drive - it just required a letter from a doctor saying I wasn't allowed to drive because of vision loss, and some forms at our local bus service.> > > > I've still got some vision loss, which may be permanent scarring ... my next vision test is next Monday. It's central, unfortunately, so I really notice it when reading etc, but it's only about 4% loss overall, compared to nearly 50% before. > > > > The main thing is to get a good neurologist and immunologist on your 'medical team' and work with them, follow their advice. There are medications which are less harsh than steroids, which can get the disease into remission ... methotrexate is what I'm on, and it seems to be doing the job so far. I've been on pred since October 10, and am tapering down now, I'm down to 20 mg/day, and hope to be off it entirely in another few months. I've also gained weight, which I HATE. It's the final straw, isn't it?! But i *do* have most of my vision back, which is definitely a Good Thing! I'm sure yours will improve too, even if it takes a while.> > > > While you do ned to adjust to a new "life with sarcoidosis", and there are some things that will have to change, and things to mourn, it's not the end of the world. I've got a spare copy of Duffy's funny and uplifting book about life with neuro-sarcoidosis, if you send me your postal address I will send it to you.> > > > Cheers,> > > > > > > > .,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.> > http://sutherland-studios.com.au> > http://www.facebook.com/pages/-Sutherland/149144697766> > .,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.> > > > > > > > > , I would have hoped for some improvement in your vision after nearly 4 weeks of Pred. Did they give you any IV steroids in the hospital, to kind of "kick things off," so to speak? If not, maybe you need that--sometimes called a steroid burst. Marla, doesn't it have another name? , I hope weighs in here, because she's also been dealing with the eye issues & did a fantastic research job. > > > RE: FW: Help Needed: Faces of Sarcoidosis Photographs> > >>>> To: neurosarcoidosis > > >>>> Date: Monday, January 17, 2011, 9:09 PM> > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>>  > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> > > >>>> That makes two of us, La!> > >>>> > > >>>> > > >>>> Ramblin' Rose> > >>>> Moderator> > >>>>  > > >>>> COLTS STILL ROCK!   > > >>>> > > >>>> > > >>>>  > > >>>> > > >>>> > > >>>> > > >>>> > > >>> > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > 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 26, 2011 Report Share Posted January 26, 2011 Thanks Rose Cheers, ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,\ ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,. http://sutherland-studios.com.au http://www.facebook.com/pages/-Sutherland/149144697766 ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,\ ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,. > , thanks for the excellent support you have provided . I really appreciate it & hope things continue to improve for you. > > Ramblin' Rose > Moderator > > COLTS STILL ROCK! > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Wed, 26 Jan 2011 17:05:36 +1100 > > Subject: Re: Re: FW: Help > > > > Hi , > > > > > I really appreciate the insight. You're right I am just feeling impatient. > > > > Hardly surprising! > > > > > My next check up for my vision is on Feb 15. I don't know what the percent of vision loss it is that I have, but it feels like, I need to take my eye out and wash it off and it will be all clear. - if only you could do that > > > > I know the feeling well, I keep feeling like my vision is 'cloudy', even though I've got an updated glasses prescription and all. And I still have that, even with most of my vision returned ... > > > > > I am walking straighter now with better balance. So I am glad about that. Even if I don't get the left eye back, I am glad to have the right eye with some clear vision, that is a good thing. > > > > Yes, it makes you really appreciate what vision you DO have, doesn't it?! Too bloody scary thinking about being completely blind > > > > > Do you mind a few questions?? So are you on two medications now - the Predizone and the methotrexate?? > > > > Yes, I'm on both - the methotrexate takes a while to build up, and once it's 'at strength' (after a few weeks) you can start to drop down the pred dose - which must be done very very slowly and carefully. Eventually I'll be just on the methotrexate, and then I may be able to come off that as well if I go into remission. Methotrexate, and other similar drugs, are also 'steroid sparers' which means that if you do need steroids, you can get the same effect on a lower dose, if you take the methotrexate at the same time. They 'spare' your body of the higher steroid doses. > > > > > Is an immunologist the same as the endocrineolgist?? > > > > No - I've got a neurologist who is a specialist with nerve / neurological problems, such as this sort of vision loss, and an immunologist who is a specialist in autoimmune diseases (like sarcoid, lupus, etc). An endocrinologist is someone who addresses endocrine / hormonal diseases, like type 1 diabetes (which my daughter has). > > > > > Are you on a special diet also for sarcoidosis?? > > > > No, just a healthy diet. Well, mostly healthy, LOL I cook almost all meals from scratch, and we rarely have fast food, and I generally have low fat, fair amount of veg and fruit etc. I don't have the will power to be on a very restrictive diet while dealing with my sarcoidosis and everything else, and in fact my doctors have advised against it, saying I've got enough to deal with without worrying about my weight etc. > > > > > When they do your vision test do they dialate your eyes each time for the field vision test?? > > > > They dilate my eyes, but that's for when they look at the back of the eye to see if it looks OK - for the peripheral vision test just have to wear an eye patch on the 'non-tested' eye, stick my head inside a white hemisphere, stare at the bright central light, and click a button every time I see a light flickering. If you want to see my results, you can look at my blog (http://jejunesplace.blogspot.com/2010/12/eye-exams.html) > > > > > I live in a small town so we do not have a bus system, but maybe I can call the local cab company and see what they say. So far my friends have been very helpful and willing to take me around town, but if this goes on for a long time I'm sure they are going to get tired of me. > > > > It could be worth contacting your national society for the blind (http://www.afb.org/ etc) too, they may have things like travel vouchers you're eligible for, for taxis, or something? I don't know - we have much more free public health and support in Australia than you do in the States. I know that Vision Australia provides services for people like us with low vision, as well as those who are fully blind. Worth contacting them for support!! > > > > > I feel much better getting your email. > > > > You're very welcome, I'm very glad I could be of some help Let me know if you'd like that copy of the Duffy book, you can send me your postal address to my private email (denise@...) rather than to the sarcoid group, to keep it private ... > > > > xo > > > > > > > Thank you. > > > > > > > > > > > > To: Neurosarcoidosis > > > Sent: Mon, January 24, 2011 10:56:27 PM > > > Subject: Re: Re: FW: Help > > > > > > > > > Hi - don't give up, the prednisolone really should do the trick, but it isn't super quick. I had 50% vision loss, with lesions in my brain around the optic nerves too. They started me on 60 mg of Pred as well, and while I didn't think things were improving much, the monthly peripheral vision tests I (still) do did show a huge amount of improvement. It's kind of hard to tell by yourself, I find I'm not a good judge of how much vision I have, you really do need to go in for those vision tests regularly. > > > > > > It sounds like your 'lump' is much bigger than what I had, and that presumably means it will take longer to respond to treatment / fade away. But - for all it's HORRIBLE side effects - the prednisolone does work wonders. You just need to be patient. Don't give up, don't despair > > > > > > I'm a knitter, and I had to stop knitting anything complicated for a few months while my vision loss was at its worst ... I couldn't see my left hand at all, when I was knitting! But I can knit quite well again now. And I'm allowed to drive again. > > > > > > Are you able to access vision impaired bus passes or something like that? I was able to get free bus travel for some months when I wasn't allowed to drive - it just required a letter from a doctor saying I wasn't allowed to drive because of vision loss, and some forms at our local bus service. > > > > > > I've still got some vision loss, which may be permanent scarring ... my next vision test is next Monday. It's central, unfortunately, so I really notice it when reading etc, but it's only about 4% loss overall, compared to nearly 50% before. > > > > > > The main thing is to get a good neurologist and immunologist on your 'medical team' and work with them, follow their advice. There are medications which are less harsh than steroids, which can get the disease into remission ... methotrexate is what I'm on, and it seems to be doing the job so far. I've been on pred since October 10, and am tapering down now, I'm down to 20 mg/day, and hope to be off it entirely in another few months. I've also gained weight, which I HATE. It's the final straw, isn't it?! But i *do* have most of my vision back, which is definitely a Good Thing! I'm sure yours will improve too, even if it takes a while. > > > > > > While you do ned to adjust to a new " life with sarcoidosis " , and there are some things that will have to change, and things to mourn, it's not the end of the world. I've got a spare copy of Duffy's funny and uplifting book about life with neuro-sarcoidosis, if you send me your postal address I will send it to you. > > > > > > Cheers, > > > > > > > > > > > > ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,\ ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,. > > > http://sutherland-studios.com.au > > > http://www.facebook.com/pages/-Sutherland/149144697766 > > > ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,\ ..,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,.,. > > > > > > > > > > > > > , I would have hoped for some improvement in your vision after nearly 4 weeks of Pred. Did they give you any IV steroids in the hospital, to kind of " kick things off, " so to speak? If not, maybe you need that--sometimes called a steroid burst. Marla, doesn't it have another name? , I hope weighs in here, because she's also been dealing with the eye issues & did a fantastic research job. > > > > RE: FW: Help Needed: Faces of Sarcoidosis Photographs > > > >>>> To: neurosarcoidosis > > > >>>> Date: Monday, January 17, 2011, 9:09 PM > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>>  > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> That makes two of us, La! > > > >>>> > > > >>>> > > > >>>> Ramblin' Rose > > > >>>> Moderator > > > >>>>  > > > >>>> COLTS STILL ROCK!   > > > >>>> > > > >>>> > > > >>>>  > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>> > > > > > > > > > > > > ------------------------------------ > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > 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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