Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 Ok guys...once again all of my MRI's came back normal. I have to say I am so sick of this s**t. I was hoping for once I could get a final dx and try to get my life back. The prednisone is really giving me a fit and I am tired of feeling like elcrappo. So here it goes "#$%^ * & & ^%$$#@!!!!!!$%^ & %$^%$%@@@@$%^ & *^*********!!!!!!!!. OK, I think I feel better for now. The MRI's were completely normal, the neck is full of bulging discs and degeneration but whatever. Thanks for listening Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 Terri, Rant away, and I am glad that it helped. My mri was also within "normal limits. But they dx'd me on the symptoms that I was having. Been there done that with the pred too, so please be carful of the side effects with that drug. How much are you on? Are you weaning off? PLease let loose anytime. Lots of Love Lynnemosaicgirl1 wrote: Ok guys...once again all of my MRI's came back normal. I have to say I am so sick of this s**t. I was hoping for once I could get a final dx and try to get my life back. The prednisone is really giving me a fit and I am tired of feeling like elcrappo. So here it goes "#$%^ * & & ^%$$#@!!!!!!$%^ & %$^%$%@@@@$%^ & *^*********!!!!!!!!. OK, I think I feel better for now. The MRI's were completely normal, the neck is full of bulging discs and degeneration but whatever. Thanks for listening Terri G. To My New Family Love Lynne Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 The MRI's were completely normal, the neck is full of bulging discs and degeneration but whatever. Normal is not bulging discs and degeneration. There's nothing normal about that. Ok-- so they didn't show sarcoidosis-- supposedly. I take it this was a mri of the brain? I'd be asking for a second opinion-- maybe have the scans forwarded to Dr. Baughman or Dr. Sharma? The prednisone alone can suppress the granulomas enough so that you won't see them on MRI. Sadly, it's not unusual that MRI's or CT's or PET's don't show up with granulomas. It's possible that you have vasculitis-- inflammation of the blood vessels. If the blood vessels are inflamed, and it's in your brain-- then you can have defiencies in the area of the brain that does whatever function. For me, it's the frontal lobe-- where the problem solving, multi-tasking, personality, sexuality, comprehension skills all take place. It was the neuropsych testing that confirmed these issues. It's also the part that handles short-term memory. So even with a clear brain scan-- the history of systemic sarcoidosis- eyes, lungs, lymphs, muscles and ligaments--- sarcoid induced arthritis-- I still have NS. For our MD's to rely souly on scans and bloodwork doesn't work with this disease-- it is a diagnosis of exclusion. When they've excluded all the other auto-immune diseases-- MS, Lupus, RA, then they can put the puzzle together. Since you already have a confirmed lung diagnosis-- then you have become one of the chosen few-- that have chronic progressive sarcoidosis. I do hope that you've pulled up the brochure at FSR--www.stopsarcoidosis.org. Take it into your MD's and insist they go over it with you. Hang in there Terri, we've all been there-- and it will come together. I'll leave the rant scoring to Rose-- Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Oh my, I'll give that rant a 9 for expressive content and a 10+ for presentation. Rant away whenever you need to Terri. I think everyone of us has been down that road so we can genuinely sympathize...I know that I could paper my wall with all the negative test results from over the years. > > > Ok guys...once again all of my MRI's came back normal. I have to say I > am so sick of this s**t. I was hoping for once I could get a final dx > and try to get my life back. The prednisone is really giving me a fit > and I am tired of feeling like elcrappo. So here it goes " #$%^ > *&&^%$$#@!!!!!!$% ^& %$^%$%@@@@$% > ^&*^*********!!!!!!!!. OK, I think I > feel better for now. > > The MRI's were completely normal, the neck is full of bulging discs and > degeneration but whatever. > > Thanks for listening > > Terri G. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Lynn, Thanks for listening. I am on 30mg q day. I am going to call the neurologist today; if the MRI came back " normal " we discussed moving to another immunosuppressant. I am ready for a change. The prednisone is driving me nuts plus I don't want to worry about bone issues. I did just break a toe a couple of weeks ago (not just a little crack) and I have never broken a bone before so I think it is time for a change. I know it will take awhile to get off of it, but I am ready. Thanks for everything. Terri > Ok guys...once again all of my MRI's came back normal. I have to say I am so sick of this s**t. I was hoping for once I could get a final dx and try to get my life back. The prednisone is really giving me a fit and I am tired of feeling like elcrappo. So here it goes " #$%^ *&&^%$$#@!!!!!!$%^& %$^%$%@@@@$%^&*^*********!!!!!!!!. OK, I think I feel better for now. > The MRI's were completely normal, the neck is full of bulging discs and degeneration but whatever. > Thanks for listening > Terri G. > > > > > > > > > To My New Family > > Love Lynne > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Yahoo! Autos. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 Terri, excellent short program! Classic choreography. Rant score: Content 8.4 Presentation 7.8 Don't forget to work on your long program; try to include some triple #*?!@ & $! with a smooth transition into a long tailspin. You really have talent. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: rantDate: Sun, 29 Apr 2007 14:02:25 -0000 Ok guys...once again all of my MRI's came back normal. I have to say I am so sick of this s**t. I was hoping for once I could get a final dx and try to get my life back. The prednisone is really giving me a fit and I am tired of feeling like elcrappo. So here it goes "#$%^ * & & ^%$$#@!!!!!!$%^ & %$^%$%@@@@$%^ & *^*********!!!!!!!!. OK, I think I feel better for now. The MRI's were completely normal, the neck is full of bulging discs and degeneration but whatever. Thanks for listening Terri G. Mortgage rates near historic lows. Refinance $200,000 loan for as low as $771/month* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 , I did not really have a positive lung diagnosis. The thoracic surgeon couldn't get to the hylar nodes without extreme risk and now the nodes have gone down. The neuropsych tests are positive for changes, I have arthritis, neurogenic bladder, etc but noone wants to put a name to it. I am going to call today about changing immunosuppresants. I get myelopathy when I am on prednisone and it really causes problems with my legs (upper thigh muscles). I will pull up the brochure - I don't remember doing it before. Thanks for all of your help and kindness. And for Tony - I am getting one year closer to your record in waiting for a diagnosis. Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 Tony and Rose, Thanks for the scoring. I think I got it all out of my system for now - but just wait. I am like a teapot. I build up, blow some steam, back off and start all over. Tony, we could go into a wallpaper business with all those negative test results, huh? Terri G. > > > > > > Ok guys...once again all of my MRI's came back normal. I have to > say I > > am so sick of this s**t. I was hoping for once I could get a final > dx > > and try to get my life back. The prednisone is really giving me a > fit > > and I am tired of feeling like elcrappo. So here it goes " #$%^ > > *&&^%$$#@!!!!!!$% ^& %$^%$%@@@@$% > > ^&*^*********!!!!!!!!. OK, I think > I > > feel better for now. > > > > The MRI's were completely normal, the neck is full of bulging discs > and > > degeneration but whatever. > > > > Thanks for listening > > > > Terri G. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Terri, The MRI films make decorative suncatchers for the window or can be framed for as a nice conversation piece. The possibilities are endless...thanks for the smile! Peace, Tony > > > Tony and Rose, > > Thanks for the scoring. I think I got it all out of my system for now - > but just wait. I am like a teapot. I build up, blow some steam, back > off and start all over. > > Tony, we could go into a wallpaper business with all those negative test > results, huh? > > Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Welcome > >> > > > Tony and Rose,> > > > Thanks for the scoring. I think I got it all out of my system for > now -> > but just wait. I am like a teapot. I build up, blow some steam, > back> > off and start all over.> > > > Tony, we could go into a wallpaper business with all those negative > test> > results, huh?> > > > Terri G.> Quote Link to comment Share on other sites More sharing options...
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