Guest guest Posted November 8, 2010 Report Share Posted November 8, 2010 The other thing Dr Lueck (new neuro) told me was that my lumbar puncture results WERE ABNORMAL - my first neuro (or one of his registrars, I can't recall) told me it was all normal! I *did* have oglioclonal bands in the CSF, and did have elevated white blood cells!! Both these findings are indicative of NS, too! I'm also Vitamin D deficient ... Cheers, .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > I'm just back from seeing my new neurologist - he is a neuro-ophthalmologist, and the specialist that my first neurologist was consulting while I was in hospital ... He is *wonderful* - a modest softly spoken man, highly intelligent, explained things well, and was generally brilliant. I've now " appointed " him to my medical team, instead of my first neurologist (who is more of a Parkinsons' specialist). > > He is quite convinced that I *do* have neurosarcoid ... he says the region of my brain that was affected (optic chiasm) is very typical for NS, and that all the other signs and symptoms really point in this direction too. He doesn't think I need a cerebral angiogram. He says that while I may not get a definitive tissue diagnosis, it doesn't really matter as it won't affect treatment. > > He wants me to stay on my current pred dose (I'm down to 40 mg, tapering down slowly from 60), until we see if the remaining vision loss and blurry vision gets better, it's worth continuing to hammer it. He's also prepared me for the fact that there may be permanent scarring and I may not regain this last bit of vision (which would be a bummer, as it's my central vision and impacts on reading still). > > He said that it could be good to go onto Imuran and cyclophosphamide as they are " steroid sparing " - when you take them with steroids, they lower the amount of steroids you need. > > So feeling happier, especially in hoping that vasculitis is less likely in his eyes anyway .... > > Cheers, > > > > .................................................................................\ ........................ > http://sutherland-studios.com.au > > Dummies author : > http://tinyurl.com/CodesandCryptograms > http://tinyurl.com/WordSearches > > .................................................................................\ ........................ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2010 Report Share Posted November 8, 2010 , it's such a relief to have at least one provider on board that you can trust. This guy sounds like a keeper; this is when I think human cloning might not be such a bad idea . . . . . . . Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Mon, 8 Nov 2010 17:10:06 +1100> Subject: New neurologist> > I'm just back from seeing my new neurologist - he is a neuro-ophthalmologist, and the specialist that my first neurologist was consulting while I was in hospital ... He is *wonderful* - a modest softly spoken man, highly intelligent, explained things well, and was generally brilliant. I've now "appointed" him to my medical team, instead of my first neurologist (who is more of a Parkinsons' specialist).> > He is quite convinced that I *do* have neurosarcoid ... he says the region of my brain that was affected (optic chiasm) is very typical for NS, and that all the other signs and symptoms really point in this direction too. He doesn't think I need a cerebral angiogram. He says that while I may not get a definitive tissue diagnosis, it doesn't really matter as it won't affect treatment.> > He wants me to stay on my current pred dose (I'm down to 40 mg, tapering down slowly from 60), until we see if the remaining vision loss and blurry vision gets better, it's worth continuing to hammer it. He's also prepared me for the fact that there may be permanent scarring and I may not regain this last bit of vision (which would be a bummer, as it's my central vision and impacts on reading still).> > He said that it could be good to go onto Imuran and cyclophosphamide as they are "steroid sparing" - when you take them with steroids, they lower the amount of steroids you need.> > So feeling happier, especially in hoping that vasculitis is less likely in his eyes anyway ....> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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...
Guest guest Posted November 8, 2010 Report Share Posted November 8, 2010 , I've only had one L.P., back in 2001. My neurologist, who is actually very good, told me that it was normal--that the protein was slightly elevated, but wasn't significant. Several years later when I saw Baughman in Cincinnati, Ohio, he looked at the results & said that he would have considered the protein level "significant." So I guess it's in how they interpret it. Another good reason to get other opinions, and get your own copies of tests & procedures. Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) > To: Neurosarcoidosis > Date: Tue, 9 Nov 2010 07:44:20 +1100> Subject: Re: New neurologist> > The other thing Dr Lueck (new neuro) told me was that my lumbar puncture results WERE ABNORMAL - my first neuro (or one of his registrars, I can't recall) told me it was all normal! I *did* have oglioclonal bands in the CSF, and did have elevated white blood cells!! Both these findings are indicative of NS, too! I'm also Vitamin D deficient ...> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > I'm just back from seeing my new neurologist - he is a neuro-ophthalmologist, and the specialist that my first neurologist was consulting while I was in hospital ... He is *wonderful* - a modest softly spoken man, highly intelligent, explained things well, and was generally brilliant. I've now "appointed" him to my medical team, instead of my first neurologist (who is more of a Parkinsons' specialist).> > > > He is quite convinced that I *do* have neurosarcoid ... he says the region of my brain that was affected (optic chiasm) is very typical for NS, and that all the other signs and symptoms really point in this direction too. He doesn't think I need a cerebral angiogram. He says that while I may not get a definitive tissue diagnosis, it doesn't really matter as it won't affect treatment.> > > > He wants me to stay on my current pred dose (I'm down to 40 mg, tapering down slowly from 60), until we see if the remaining vision loss and blurry vision gets better, it's worth continuing to hammer it. He's also prepared me for the fact that there may be permanent scarring and I may not regain this last bit of vision (which would be a bummer, as it's my central vision and impacts on reading still).> > > > He said that it could be good to go onto Imuran and cyclophosphamide as they are "steroid sparing" - when you take them with steroids, they lower the amount of steroids you need.> > > > So feeling happier, especially in hoping that vasculitis is less likely in his eyes anyway ....> > > > Cheers,> > > > > > > > .......................................................................................................> > http://sutherland-studios.com.au> > > > Dummies author :> > http://tinyurl.com/CodesandCryptograms> > http://tinyurl.com/WordSearches> > > > .......................................................................................................> > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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...
Guest guest Posted November 8, 2010 Report Share Posted November 8, 2010 , I am so glad you found a Doctor you can trust and feel good about, that's so important.I'm glad he's thinking other medications as a future option. I'm glad you feel better with all this too, it effects the way you feel too. So here's hoping for better days. 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:) I'm just back from seeing my new neurologist - he is a neuro-ophthalmologist, and the specialist that my first neurologist was consulting while I was in hospital ... He is *wonderful* - a modest softly spoken man, highly intelligent, explained things well, and was generally brilliant. I've now " appointed " him to my medical team, instead of my first neurologist (who is more of a Parkinsons' specialist). He is quite convinced that I *do* have neurosarcoid ... he says the region of my brain that was affected (optic chiasm) is very typical for NS, and that all the other signs and symptoms really point in this direction too. He doesn't think I need a cerebral angiogram. He says that while I may not get a definitive tissue diagnosis, it doesn't really matter as it won't affect treatment. He wants me to stay on my current pred dose (I'm down to 40 mg, tapering down slowly from 60), until we see if the remaining vision loss and blurry vision gets better, it's worth continuing to hammer it. He's also prepared me for the fact that there may be permanent scarring and I may not regain this last bit of vision (which would be a bummer, as it's my central vision and impacts on reading still). He said that it could be good to go onto Imuran and cyclophosphamide as they are " steroid sparing " - when you take them with steroids, they lower the amount of steroids you need. So feeling happier, especially in hoping that vasculitis is less likely in his eyes anyway .... Cheers, ........................................................................................................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches ........................................................................................................ Quote Link to comment Share on other sites More sharing options...
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