Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 When they were deciding which I had the neurologist did a spinal tap. If the spinal fluid contained (sp) Oligclonal bodies} this was the debris from MS. If none were present the diagnosis was neurosaarcoid. Judy in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2007 Report Share Posted February 26, 2007 Judy, Initially I had the dx of MS from oligliclonal bands in the spinal fluid but when I went to s Hopkins, the physician there stated that my results were not conclusive because the lab did not assign a number to the bands (how many). So because of enlarged hilar nodes the possible dx of NS was made. It is still up in the air because everything now is coming up negative (MRI's etc) Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2007 Report Share Posted February 26, 2007 Terri, I know you've probably told us before, but were the hilar nodes biopsied to confirm sarc? Testing is such a gray area, as many have normal MRI's, normal ACE levels, etc. I truly believe that diagnosing NS is as much an art as it is science. Doctors who place all of their faith in "science" are reluctant to make the call. It takes someone who looks at all the puzzle pieces--testing, patient's own story, a thorough physical exam, experience, research--and has the knowledge & confidence to make the diagnosis. Unfortunately, we as a culture seem to trust technology over common sense & examination skills, and the medical community reflects that. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: MS vs. NeurosarcoidDate: Mon, 26 Feb 2007 13:53:39 -0000 Judy,Initially I had the dx of MS from oligliclonal bands in the spinal fluidbut when I went to s Hopkins, the physician there stated that myresults were not conclusive because the lab did not assign a number tothe bands (how many). So because of enlarged hilar nodes the possibledx of NS was made. It is still up in the air because everything now iscoming up negative (MRI's etc)Terri G. Find what you need at prices you’ll love. Compare products and save at MSN® Shopping. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Rose, They couldn't get to the nodes without some very serious, very complicated surgery. They were very close to some major vessels and nerves and I would have had to have a thoracotomy. We are hoping others will show in less dangerous areas. Thanks for the encouragement though. I am at one of those points I don't know what to do next. Terri G. Quote Link to comment Share on other sites More sharing options...
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