Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 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 > From: ladyt19119@... > 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!   > > >  > > > > From: robbiedarden57@... > 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 24, 2011 Report Share Posted January 24, 2011 Sorry, I haven't responded sooner to you, and no I don't mind the questions, I have plenty myself about all this. As far as my diagnosis and symptoms, everything happened quite fast. Not sure how long I have actually had this disease, but how I got diagnosed was because my eyesight was decreasing pretty steady in the fall of 2010 and for about three days it felt like there was something in my eye that I just could not get out, so I had a friend look at it and she said that I should go to the eye doc. The next day I went to the eye doc and he said I want you go to downstairs to get a CT your Optic nerves are very swollen and I want to check for a tumor. The CT came back clear so he thought I just had brain swelling and that a neurologist is the one who prescribes that medicine. I went to the neurologist and he did a spinal tap in the office and after it came back normal he and ordered an MRI. The MRI showed a mass - which they thought was a tumor - on my optic nerves where they join in the middle of my brain. They did a number of tests on my spinal fluid and blood and everything came back in the normal range, so they wanted to do a biopsy to find out what exactly it is that I have and then know how to treat it. - The insurance wanted a second opinion so they sent me to the Mayo Clinic in MN. There I spent the week going through many tests, they tested everything and came up with the same conclusion - that they needed to do a biopsy on the mass to determine what is exactly and then know how to treat it. On Dec 27, 2010 I went for the brain biopsy on my optic nerves. After reviewing the results of the sample my neurologist determined that it is Neurosarcoidosis and put my on 60mg of predizone for the first six weeks. I go back to the Mayo clinic in MN on Feb 14 for a couple of days to go through tests to see if the inflammation has gone down, to see if my vision has stayed the same or has gotten better and I also see a endocrinolgist then too. I feel I have a good team in place taking care of me and my needs - - I guess that is the long version of it, but my main symptom is that my vision was decreasing on a steady and semi rapid pace. I have no perifrial vision in both eyes. My left eye - well the vision is bad there and I don't really count on it. My right eye is mostly clear, but does have some foggy spots. Right now I am not sure what is a symptom of the disease or if it is the side effect of the medicine. I am sooooo bloated and have gained 40 pounds from I'm thinking the medicine is doing that, my legs are aching - like I have weights tied to them - and I am tired alot. My handicap now is learning to how to do things with this limited sight. I can't drive now so am relying on others for rides to the store and bible study. I am a sewer so and have been chicken to try that, but am going to this week. I am very frustrated with this new life and have been quite irritable with my family - can't do the things I was doing before with them and I am feeling left out at times and wondering what is going to happen next. I can't work anymore - and as a stay at home mom that was my outlet to get out of the house during the day. I wonder if I am going to loose my sight or what is going to happen next?? This being in my brain totally scares me. Am I on a time limit now?? I have a five year old and would like to see her grow up. I totally like the rest of you want my old life back, and trying to accept this as the new normal. Just being thrown into this over a couple of weeks is very overwhelming, but I do need to look on the up side - it could be a lot worse. > > > > > > From: Rose <mamadogrose@> > > > 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 > > > From: ladyt19119@ > > > 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 <mamadogrose@> > > > 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!   > > > > > > > > >  > > > > > > > > > > > > From: robbiedarden57@ > > > 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: > > > > > > > > > > > > From: " Team Inspire " <team@> > > > Date: January 16, 2011 8:28:16 PM EST > > > To: " RobbieD " <mckenna395@> > > > 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...
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