Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 Hi Everyone! I am also still here, but have been reading but not posting. My situation is similar to everyone else's- I have good and bad days. I am currently back on Cellcept for my sarc. I just restarted it after 6 months using methotrexate/plaquenil/prednisone. That combination was working, but it was beating up my liver so I had to switch. I've seen several neurologists, and noboby can seem to agree about what's going on with me. I have brain/spine mri's and ct scans at least every 3-6 months. Sarc is so frustrating!!! Ugh.... Wishing you all pain free, happy days... Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2010 Report Share Posted September 21, 2010 It is interesting that your neuor doesn.t want to repeat the MRI's.. has neurosarc and they repeat her MRI's about every 6 months so they can see if the granulomas are increasing decreasing or staying the same. This was how this past May they found that a good portion of her problems including the fall into the dresser could be contributed to the granulomas increasing. Hope you are doing a bit better. Take care.Matt Hi Everyone! I am also still here, but have been reading but not posting. My situation is similar to everyone else's- I have good and bad days. I am currently back on Cellcept for my sarc. I just restarted it after 6 months using methotrexate/plaquenil/prednisone. That combination was working, but it was beating up my liver so I had to switch. I've seen several neurologists, and noboby can seem to agree about what's going on with me. I have brain/spine mri's and ct scans at least every 3-6 months. Sarc is so frustrating!!! Ugh.... Wishing you all pain free, happy days... Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2010 Report Share Posted September 21, 2010 Well Matt I think that's because they saw granulomas on her MRI's and they could tract them, they didn't see any on mine, my symptoms are not as bad as 's either so that would make sense. I think if I got a lot worse they would repeat the MRI, but only little changes here and there, the biggest problem recently is related to being over a week late on Remicade due to Insurance issues, and it will take a little while before I catch up. Matt even with my limitations I can take full care of myself, and your such a blessing for . Ms 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:) It is interesting that your neuor doesn.t want to repeat the MRI's.. has neurosarc and they repeat her MRI's about every 6 months so they can see if the granulomas are increasing decreasing or staying the same. This was how this past May they found that a good portion of her problems including the fall into the dresser could be contributed to the granulomas increasing. Hope you are doing a bit better. Take care.Matt Hi Everyone! I am also still here, but have been reading but not posting. My situation is similar to everyone else's- I have good and bad days. I am currently back on Cellcept for my sarc. I just restarted it after 6 months using methotrexate/plaquenil/prednisone. That combination was working, but it was beating up my liver so I had to switch. I've seen several neurologists, and noboby can seem to agree about what's going on with me. I have brain/spine mri's and ct scans at least every 3-6 months. Sarc is so frustrating!!! Ugh.... Wishing you all pain free, happy days... Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2010 Report Share Posted September 21, 2010 Thanks Marla. Yes the doctors are able to track 's Granulomas and can tell when they get worse etc. As a result of the large granulomas her limitations are quite severe. I am glad that you are as well as you can be. Take care of yourself. Matt Hi Everyone! I am also still here, but have been reading but not posting. My situation is similar to everyone else's- I have good and bad days. I am currently back on Cellcept for my sarc. I just restarted it after 6 months using methotrexate/plaquenil/prednisone. That combination was working, but it was beating up my liver so I had to switch. I've seen several neurologists, and noboby can seem to agree about what's going on with me. I have brain/spine mri's and ct scans at least every 3-6 months. Sarc is so frustrating!!! Ugh.... Wishing you all pain free, happy days... Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2010 Report Share Posted September 22, 2010 Are you "THE" Becky that comes to the Indy sarc retreat? I'm not very good at last names. If you aren't "THAT" Becky, then you are definitely "ANOTHER" Becky, just as wonderful! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Wed, 22 Sep 2010 18:27:59 +0000> Subject: Roll Call> > Hello everyone. It has been a long time since I posted. I read all the digest and tried to reply but I don't think it went in.> > I have had sarcoidosis since 2001. It started as neuro but is now in my eyes and bones. I am on methotrexate/plaquenil/decadron. Seems to be holding it at bay somewhat. My ACE level stays elevated, but no visible granulomas on MRI.> > I am able to work part time. I am thankful for that.> > You are a great group.> > Becky> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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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