Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 I had brain atrophy on my mri. My original neurologist seemed to think it was because of my shunt surgery. He was useless. He never ordered tests and only wrote prescriptions for symptoms. I never thought about it being from the sarc. grannylunatic@... Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Tracie, Your advice is always so good, I love reading your post, I learn something new all the time, thanks for all you do! Marl a " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Friday, July 13, 2007 10:18 PM To: ostrichlegs_2000@...; Neurosarcoidosis Subject: Re: brain atrophy In a message dated 7/13/2007 4:38:13 P.M. Pacific Daylight Time, ostrichlegs_2000 (AT) yahoo (DOT) com writes: i just got my mri report back and they found brain atrophy, is part of the saarcoid or has this been a part of someone elses sarcoid???? please let me know any info you have on this. thanks ken Ken, this is a fantastic site!!!!!!!!!!!!! Yes, this is part of sarcoidosis and is a sign of cerebral vasculitis. http://radiology.rsnajnls.org/cgi/content/full/213/3/794 I highly suggest you print this out and take it to the neurologist. I did a search with " brain atrophy and sarcoidosis " . Got a lot of hits-- so plenty to read! You need some serious immunosupressant meds, Cytoxan, Remicade, Enbrel, Humira are all choices. What Remicade and Cellcept have going for them is that they specifically target the TNF-b cell protein and don't wipe out your entire immune system. This was actually an article on Wegeners Granulomatous, which is a close cousin to sarcoidosis, and some think that these are one and the same. Interesting to me is that it is significant in those of us that have sinus involvement. A full body scan might show that you have dura thickening along your spinal cord also. I know this is scary- and that you can get your life back. At least a good portion of it. It's going to take a combination of drugs, and I hope they start introducing something other than the steroids. Your " cocktail " will be for life-- that is you will not be able to discontinue them. If you did stop taking them, then the sarc bugger would come back, and so by staying on a regime, you keep it at bay. I will tell you from personal experience, that once I got the right combo, I've regained some of my mental function-- and my body and bone pain is much better. I still see some muscle wasting in my legs, but my mind is clearer. Much clearer. The exhaustion and fatigue are issues I deal with-- by pacing myself. It's all I can do-- and we have to learn to listen to our bodies. With compassion, Tracie NS Co-owner/moderator Get a sneak peak of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Marla, You are welcome, and I'm so grateful that you do learn from what I share. Blessings my friend, TracieGet a sneak peak of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
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