Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Cathy, I've found that Melatonin tablets 10mg about 2 minutes before bedtime seem to help. Make sure when you get up that you get outside in the daylight for a few minutes so that it's effects don't carry on thru the day. Hugs, Tracie --- Cathy Borden wrote: > Does anyone know something good to take for sleep? I > have recently (past few weeks) been consistantly > been having trouble sleeping which seems crazy > because I am completely exhausted. > Thanks! > Cathy > > Rick Jack wrote: > Tracie, > I will ask my Dr about Plaquenil, I very rarely > use Ambein but I do take a sleeping pill that begins > with a " Z " . My job keeps my mind challenged I have > to work with calculus now and then but when it comes > to something as simple as remembering a schedule or > where I put down my glasses I'm lost. > Thanks for your reply. > Rick > > tracie feldhaus wrote: > Rick, > The best thing I did for my memory loss was the > Plaquenil. That and we eliminated (I eliminated) the > Ambien. One of the major side effects of daily use > of > sleep aids was short-term memory loss. > However, even with it gone, I flunked the Neuropsych > tests that confirm short term memory and problem > solving. > I've found that playing Scrabble online, and Majong > online are really helpful for my keeping my brain > more > 'flexible.' But I also find that I become almost to > the point of being obsessed with the games and can't > pull myself away-- and that has never been a problem > before. > > Tracie > NS Co-owner/moderator > > --- Rick Jack wrote: > > > Tracie, > > When I was admitted to the hospital one of the > > first tests I had was a Spinal Tap, they did find > > protein in my fluid but MS was never mentioned. > They > > found granulomas in my lymph glands using scans > and > > x-rays. At that time they performed a bronchoscopy > > and broke through my lungs to get a biopsy of one > of > > the lymph glands. Cancer was brought up but never > > MS. > > What interests me about your post is the > > Neuropsych test. I will have to ask my Neurologist > > about that. I'm presently working 12hr shifts > > (2pm-2am) in the field of X-Ray Macromolecular > > Protein Crystallography (working for the > > government). I'm responsible for coordination of > > experiments for famous visiting scientists and > post > > doc students. > > The bottom line is my short term memory is toast > > and unless I write down everything I'm in sad > shape. > > Then I have to remember where I wrote it down. I'm > > working, driving, & living on Percocet which helps > > the pain and controlling my double vision. > > Have you or anyone found any remedy for memory > > loss? > > Thanks, > > Rick > > > > tracie feldhaus wrote: > > Cathy, > > MS has specific protein bands in the spinal fluid > > that > > isn't there with NS. > > NS is a diagnosis of elimination-- when they've > > figured out that you don't have Lupus, MS, or any > of > > the other auto-immune diseases-- and they've been > > able > > to ascertain that you do have sarcoidosis > (hopefully > > biopsy proven)-- then you are left with NS. > > Since you have a lung full of tumors-- it would > > really > > be beneficial for you to have a bronchoscopy so > that > > they can take biopsies from the lungs and > > bronchials. > > That would be the easiest on you-- and it would > firm > > up their suspicions. > > One of the other great tests for those of us that > > don't have granulomas on the brain (NS can be > > transient in it's symptoms because often we have > > vasculitis) is Neuropsych testing. > > Each test requires the a specific part of the > brain > > to > > get the signals firing correctly for you to be > able > > to > > do the test-- and if you can't do it-- then they > > know > > what part is being effected. For many of us it > seems > > to like the frontal lobe--where the short term > > memory, > > personality, sexuality, common sense, problem > > solving > > center is- (Executive functions area). > > That is one of the primary reasons I can no longer > > work-- get me 'more' tired, or put me in a > situation > > that requires I multi-task-- and I'm toast. Prior > to > > the combination I'm now on-- I couldn't have told > > you > > where I'd park my car when shopping-- and I had > > gotten > > to a place where in my mind the bills were paid-- > > but > > I'd yet to write the checks. I also find I can't > > always follow the recipes to make even a box of > > brownies-- I end up with the mix in the baking > > dish-- > > and can't figure out how to get it mixed up. Stuff > > like that-- but since I was working for the phone > co > > and had to use 6 computer screens simualtaneously > > for > > each call-- that was out. I'd spent 17 yrs in > > medical > > admin-- and that was also gone-- docs don't like > you > > screwing up million dollar practices.... > > Wow-- I hope I answered your questions. > > > > BLessings, > > Tracie > > NS Co-owner/moderator > > > > --- Cathy Borden wrote: > > > > > How do we know for sure if we have ms or ns? > > > Cathy > > > > > > K wrote: > > > Hi, > > > I really wanted to thank everyone again who > > > responded this week to my > > > situation with my daughter. It has been my > biggest > > > challenge > > > besides NS. I have been diagnosed with NS about > 15 > > > months ago and > > > have been doing quite well with the IV > solumedrol > > > treatments > > > initially of 1000 mg and going down to 500 mg > > about > > > 3 months ago. I > > > was on 60 mg of oral prednisone and finally down > > to > > > 10 mg. We > > > started to space my IV of 500 to 5 weeks instead > > of > > > 4 and I was doing > > > quite well. We then went to 6 and I was doing > okay > > > too, infact the > > > last time I thought I could have gone another > > week. > > > So this time > > > they pushed it from 6 to 8 to see if I could > > handle > > > it. Well I got > > > zapped this week and had to go in for an > amergency > > > appointment where > > > he diagnosed me with a mild exacerbation as I > had > > > weakness, numbness > > > in my arms and legs, gait problems again. but > This > > > time I had the new > > > symptom of total pain in my arms and legs which > is > > a > > > new symptom I > > > did not have with the initial bout of optic > > neuritis > > > etc. I did > > > have a slight pain in the left side of my brain > > and > > > a slight pressure > > > and trouble getting out of chair again. So I got > === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Cathy, I've found that Melatonin tablets 10mg about 2 minutes before bedtime seem to help. Make sure when you get up that you get outside in the daylight for a few minutes so that it's effects don't carry on thru the day. Hugs, Tracie --- Cathy Borden wrote: > Does anyone know something good to take for sleep? I > have recently (past few weeks) been consistantly > been having trouble sleeping which seems crazy > because I am completely exhausted. > Thanks! > Cathy > > Rick Jack wrote: > Tracie, > I will ask my Dr about Plaquenil, I very rarely > use Ambein but I do take a sleeping pill that begins > with a " Z " . My job keeps my mind challenged I have > to work with calculus now and then but when it comes > to something as simple as remembering a schedule or > where I put down my glasses I'm lost. > Thanks for your reply. > Rick > > tracie feldhaus wrote: > Rick, > The best thing I did for my memory loss was the > Plaquenil. That and we eliminated (I eliminated) the > Ambien. One of the major side effects of daily use > of > sleep aids was short-term memory loss. > However, even with it gone, I flunked the Neuropsych > tests that confirm short term memory and problem > solving. > I've found that playing Scrabble online, and Majong > online are really helpful for my keeping my brain > more > 'flexible.' But I also find that I become almost to > the point of being obsessed with the games and can't > pull myself away-- and that has never been a problem > before. > > Tracie > NS Co-owner/moderator > > --- Rick Jack wrote: > > > Tracie, > > When I was admitted to the hospital one of the > > first tests I had was a Spinal Tap, they did find > > protein in my fluid but MS was never mentioned. > They > > found granulomas in my lymph glands using scans > and > > x-rays. At that time they performed a bronchoscopy > > and broke through my lungs to get a biopsy of one > of > > the lymph glands. Cancer was brought up but never > > MS. > > What interests me about your post is the > > Neuropsych test. I will have to ask my Neurologist > > about that. I'm presently working 12hr shifts > > (2pm-2am) in the field of X-Ray Macromolecular > > Protein Crystallography (working for the > > government). I'm responsible for coordination of > > experiments for famous visiting scientists and > post > > doc students. > > The bottom line is my short term memory is toast > > and unless I write down everything I'm in sad > shape. > > Then I have to remember where I wrote it down. I'm > > working, driving, & living on Percocet which helps > > the pain and controlling my double vision. > > Have you or anyone found any remedy for memory > > loss? > > Thanks, > > Rick > > > > tracie feldhaus wrote: > > Cathy, > > MS has specific protein bands in the spinal fluid > > that > > isn't there with NS. > > NS is a diagnosis of elimination-- when they've > > figured out that you don't have Lupus, MS, or any > of > > the other auto-immune diseases-- and they've been > > able > > to ascertain that you do have sarcoidosis > (hopefully > > biopsy proven)-- then you are left with NS. > > Since you have a lung full of tumors-- it would > > really > > be beneficial for you to have a bronchoscopy so > that > > they can take biopsies from the lungs and > > bronchials. > > That would be the easiest on you-- and it would > firm > > up their suspicions. > > One of the other great tests for those of us that > > don't have granulomas on the brain (NS can be > > transient in it's symptoms because often we have > > vasculitis) is Neuropsych testing. > > Each test requires the a specific part of the > brain > > to > > get the signals firing correctly for you to be > able > > to > > do the test-- and if you can't do it-- then they > > know > > what part is being effected. For many of us it > seems > > to like the frontal lobe--where the short term > > memory, > > personality, sexuality, common sense, problem > > solving > > center is- (Executive functions area). > > That is one of the primary reasons I can no longer > > work-- get me 'more' tired, or put me in a > situation > > that requires I multi-task-- and I'm toast. Prior > to > > the combination I'm now on-- I couldn't have told > > you > > where I'd park my car when shopping-- and I had > > gotten > > to a place where in my mind the bills were paid-- > > but > > I'd yet to write the checks. I also find I can't > > always follow the recipes to make even a box of > > brownies-- I end up with the mix in the baking > > dish-- > > and can't figure out how to get it mixed up. Stuff > > like that-- but since I was working for the phone > co > > and had to use 6 computer screens simualtaneously > > for > > each call-- that was out. I'd spent 17 yrs in > > medical > > admin-- and that was also gone-- docs don't like > you > > screwing up million dollar practices.... > > Wow-- I hope I answered your questions. > > > > BLessings, > > Tracie > > NS Co-owner/moderator > > > > --- Cathy Borden wrote: > > > > > How do we know for sure if we have ms or ns? > > > Cathy > > > > > > K wrote: > > > Hi, > > > I really wanted to thank everyone again who > > > responded this week to my > > > situation with my daughter. It has been my > biggest > > > challenge > > > besides NS. I have been diagnosed with NS about > 15 > > > months ago and > > > have been doing quite well with the IV > solumedrol > > > treatments > > > initially of 1000 mg and going down to 500 mg > > about > > > 3 months ago. I > > > was on 60 mg of oral prednisone and finally down > > to > > > 10 mg. We > > > started to space my IV of 500 to 5 weeks instead > > of > > > 4 and I was doing > > > quite well. We then went to 6 and I was doing > okay > > > too, infact the > > > last time I thought I could have gone another > > week. > > > So this time > > > they pushed it from 6 to 8 to see if I could > > handle > > > it. Well I got > > > zapped this week and had to go in for an > amergency > > > appointment where > > > he diagnosed me with a mild exacerbation as I > had > > > weakness, numbness > > > in my arms and legs, gait problems again. but > This > > > time I had the new > > > symptom of total pain in my arms and legs which > is > > a > > > new symptom I > > > did not have with the initial bout of optic > > neuritis > > > etc. I did > > > have a slight pain in the left side of my brain > > and > > > a slight pressure > > > and trouble getting out of chair again. So I got > === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Thank you Tracie! I will try that! Have a restful day today.tracie feldhaus wrote: Cathy, I've found that Melatonin tablets 10mg about 2minutes before bedtime seem to help. Make sure whenyou get up that you get outside in the daylight for afew minutes so that it's effects don't carry on thruthe day. Hugs,Tracie--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Does anyone know something good to take for sleep? I> have recently (past few weeks) been consistantly> been having trouble sleeping which seems crazy> because I am completely exhausted.> Thanks! > Cathy> > Rick Jack <jack11973 (AT) yahoo (DOT) com> wrote:> Tracie,> I will ask my Dr about Plaquenil, I very rarely> use Ambein but I do take a sleeping pill that begins> with a "Z". My job keeps my mind challenged I have> to work with calculus now and then but when it comes> to something as simple as remembering a schedule or> where I put down my glasses I'm lost.> Thanks for your reply.> Rick> > tracie feldhaus <tiodaat (AT) att (DOT) net> wrote:> Rick, > The best thing I did for my memory loss was the> Plaquenil. That and we eliminated (I eliminated) the> Ambien. One of the major side effects of daily use> of> sleep aids was short-term memory loss.> However, even with it gone, I flunked the Neuropsych> tests that confirm short term memory and problem> solving. > I've found that playing Scrabble online, and Majong> online are really helpful for my keeping my brain> more> 'flexible.' But I also find that I become almost to> the point of being obsessed with the games and can't> pull myself away-- and that has never been a problem> before.> > Tracie> NS Co-owner/moderator > > --- Rick Jack <jack11973 (AT) yahoo (DOT) com> wrote:> > > Tracie,> > When I was admitted to the hospital one of the> > first tests I had was a Spinal Tap, they did find> > protein in my fluid but MS was never mentioned.> They> > found granulomas in my lymph glands using scans> and> > x-rays. At that time they performed a bronchoscopy> > and broke through my lungs to get a biopsy of one> of> > the lymph glands. Cancer was brought up but never> > MS.> > What interests me about your post is the> > Neuropsych test. I will have to ask my Neurologist> > about that. I'm presently working 12hr shifts> > (2pm-2am) in the field of X-Ray Macromolecular> > Protein Crystallography (working for the> > government). I'm responsible for coordination of> > experiments for famous visiting scientists and> post> > doc students. > > The bottom line is my short term memory is toast> > and unless I write down everything I'm in sad> shape.> > Then I have to remember where I wrote it down. I'm> > working, driving, & living on Percocet which helps> > the pain and controlling my double vision.> > Have you or anyone found any remedy for memory> > loss?> > Thanks,> > Rick> > > > tracie feldhaus <tiodaat (AT) att (DOT) net> wrote:> > Cathy, > > MS has specific protein bands in the spinal fluid> > that> > isn't there with NS.> > NS is a diagnosis of elimination-- when they've> > figured out that you don't have Lupus, MS, or any> of> > the other auto-immune diseases-- and they've been> > able> > to ascertain that you do have sarcoidosis> (hopefully> > biopsy proven)-- then you are left with NS. > > Since you have a lung full of tumors-- it would> > really> > be beneficial for you to have a bronchoscopy so> that> > they can take biopsies from the lungs and> > bronchials. > > That would be the easiest on you-- and it would> firm> > up their suspicions.> > One of the other great tests for those of us that> > don't have granulomas on the brain (NS can be> > transient in it's symptoms because often we have> > vasculitis) is Neuropsych testing.> > Each test requires the a specific part of the> brain> > to> > get the signals firing correctly for you to be> able> > to> > do the test-- and if you can't do it-- then they> > know> > what part is being effected. For many of us it> seems> > to like the frontal lobe--where the short term> > memory,> > personality, sexuality, common sense, problem> > solving> > center is- (Executive functions area). > > That is one of the primary reasons I can no longer> > work-- get me 'more' tired, or put me in a> situation> > that requires I multi-task-- and I'm toast. Prior> to> > the combination I'm now on-- I couldn't have told> > you> > where I'd park my car when shopping-- and I had> > gotten> > to a place where in my mind the bills were paid--> > but> > I'd yet to write the checks. I also find I can't> > always follow the recipes to make even a box of> > brownies-- I end up with the mix in the baking> > dish--> > and can't figure out how to get it mixed up. Stuff> > like that-- but since I was working for the phone> co> > and had to use 6 computer screens simualtaneously> > for> > each call-- that was out. I'd spent 17 yrs in> > medical> > admin-- and that was also gone-- docs don't like> you> > screwing up million dollar practices....> > Wow-- I hope I answered your questions.> > > > BLessings,> > Tracie> > NS Co-owner/moderator> > > > --- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> > > > > How do we know for sure if we have ms or ns?> > > Cathy> > > > > > K <katskreations1 (AT) aol (DOT) com> wrote:> > > Hi,> > > I really wanted to thank everyone again who> > > responded this week to my > > > situation with my daughter. It has been my> biggest> > > challenge > > > besides NS. I have been diagnosed with NS about> 15> > > months ago and > > > have been doing quite well with the IV> solumedrol> > > treatments > > > initially of 1000 mg and going down to 500 mg> > about> > > 3 months ago. I > > > was on 60 mg of oral prednisone and finally down> > to> > > 10 mg. We > > > started to space my IV of 500 to 5 weeks instead> > of> > > 4 and I was doing > > > quite well. We then went to 6 and I was doing> okay> > > too, infact the > > > last time I thought I could have gone another> > week.> > > So this time > > > they pushed it from 6 to 8 to see if I could> > handle> > > it. Well I got > > > zapped this week and had to go in for an> amergency> > > appointment where > > > he diagnosed me with a mild exacerbation as I> had> > > weakness, numbness > > > in my arms and legs, gait problems again. but> This> > > time I had the new > > > symptom of total pain in my arms and legs which> is> > a> > > new symptom I > > > did not have with the initial bout of optic> > neuritis> > > etc. I did > > > have a slight pain in the left side of my brain> > and> > > a slight pressure > > > and trouble getting out of chair again. So I got> === message truncated === Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Thank you Tracie! I will try that! Have a restful day today.tracie feldhaus wrote: Cathy, I've found that Melatonin tablets 10mg about 2minutes before bedtime seem to help. Make sure whenyou get up that you get outside in the daylight for afew minutes so that it's effects don't carry on thruthe day. Hugs,Tracie--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Does anyone know something good to take for sleep? I> have recently (past few weeks) been consistantly> been having trouble sleeping which seems crazy> because I am completely exhausted.> Thanks! > Cathy> > Rick Jack <jack11973 (AT) yahoo (DOT) com> wrote:> Tracie,> I will ask my Dr about Plaquenil, I very rarely> use Ambein but I do take a sleeping pill that begins> with a "Z". My job keeps my mind challenged I have> to work with calculus now and then but when it comes> to something as simple as remembering a schedule or> where I put down my glasses I'm lost.> Thanks for your reply.> Rick> > tracie feldhaus <tiodaat (AT) att (DOT) net> wrote:> Rick, > The best thing I did for my memory loss was the> Plaquenil. That and we eliminated (I eliminated) the> Ambien. One of the major side effects of daily use> of> sleep aids was short-term memory loss.> However, even with it gone, I flunked the Neuropsych> tests that confirm short term memory and problem> solving. > I've found that playing Scrabble online, and Majong> online are really helpful for my keeping my brain> more> 'flexible.' But I also find that I become almost to> the point of being obsessed with the games and can't> pull myself away-- and that has never been a problem> before.> > Tracie> NS Co-owner/moderator > > --- Rick Jack <jack11973 (AT) yahoo (DOT) com> wrote:> > > Tracie,> > When I was admitted to the hospital one of the> > first tests I had was a Spinal Tap, they did find> > protein in my fluid but MS was never mentioned.> They> > found granulomas in my lymph glands using scans> and> > x-rays. At that time they performed a bronchoscopy> > and broke through my lungs to get a biopsy of one> of> > the lymph glands. Cancer was brought up but never> > MS.> > What interests me about your post is the> > Neuropsych test. I will have to ask my Neurologist> > about that. I'm presently working 12hr shifts> > (2pm-2am) in the field of X-Ray Macromolecular> > Protein Crystallography (working for the> > government). I'm responsible for coordination of> > experiments for famous visiting scientists and> post> > doc students. > > The bottom line is my short term memory is toast> > and unless I write down everything I'm in sad> shape.> > Then I have to remember where I wrote it down. I'm> > working, driving, & living on Percocet which helps> > the pain and controlling my double vision.> > Have you or anyone found any remedy for memory> > loss?> > Thanks,> > Rick> > > > tracie feldhaus <tiodaat (AT) att (DOT) net> wrote:> > Cathy, > > MS has specific protein bands in the spinal fluid> > that> > isn't there with NS.> > NS is a diagnosis of elimination-- when they've> > figured out that you don't have Lupus, MS, or any> of> > the other auto-immune diseases-- and they've been> > able> > to ascertain that you do have sarcoidosis> (hopefully> > biopsy proven)-- then you are left with NS. > > Since you have a lung full of tumors-- it would> > really> > be beneficial for you to have a bronchoscopy so> that> > they can take biopsies from the lungs and> > bronchials. > > That would be the easiest on you-- and it would> firm> > up their suspicions.> > One of the other great tests for those of us that> > don't have granulomas on the brain (NS can be> > transient in it's symptoms because often we have> > vasculitis) is Neuropsych testing.> > Each test requires the a specific part of the> brain> > to> > get the signals firing correctly for you to be> able> > to> > do the test-- and if you can't do it-- then they> > know> > what part is being effected. For many of us it> seems> > to like the frontal lobe--where the short term> > memory,> > personality, sexuality, common sense, problem> > solving> > center is- (Executive functions area). > > That is one of the primary reasons I can no longer> > work-- get me 'more' tired, or put me in a> situation> > that requires I multi-task-- and I'm toast. Prior> to> > the combination I'm now on-- I couldn't have told> > you> > where I'd park my car when shopping-- and I had> > gotten> > to a place where in my mind the bills were paid--> > but> > I'd yet to write the checks. I also find I can't> > always follow the recipes to make even a box of> > brownies-- I end up with the mix in the baking> > dish--> > and can't figure out how to get it mixed up. Stuff> > like that-- but since I was working for the phone> co> > and had to use 6 computer screens simualtaneously> > for> > each call-- that was out. I'd spent 17 yrs in> > medical> > admin-- and that was also gone-- docs don't like> you> > screwing up million dollar practices....> > Wow-- I hope I answered your questions.> > > > BLessings,> > Tracie> > NS Co-owner/moderator> > > > --- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> > > > > How do we know for sure if we have ms or ns?> > > Cathy> > > > > > K <katskreations1 (AT) aol (DOT) com> wrote:> > > Hi,> > > I really wanted to thank everyone again who> > > responded this week to my > > > situation with my daughter. It has been my> biggest> > > challenge > > > besides NS. I have been diagnosed with NS about> 15> > > months ago and > > > have been doing quite well with the IV> solumedrol> > > treatments > > > initially of 1000 mg and going down to 500 mg> > about> > > 3 months ago. I > > > was on 60 mg of oral prednisone and finally down> > to> > > 10 mg. We > > > started to space my IV of 500 to 5 weeks instead> > of> > > 4 and I was doing > > > quite well. We then went to 6 and I was doing> okay> > > too, infact the > > > last time I thought I could have gone another> > week.> > > So this time > > > they pushed it from 6 to 8 to see if I could> > handle> > > it. Well I got > > > zapped this week and had to go in for an> amergency> > > appointment where > > > he diagnosed me with a mild exacerbation as I> had> > > weakness, numbness > > > in my arms and legs, gait problems again. but> This> > > time I had the new > > > symptom of total pain in my arms and legs which> is> > a> > > new symptom I > > > did not have with the initial bout of optic> > neuritis> > > etc. I did > > > have a slight pain in the left side of my brain> > and> > > a slight pressure > > > and trouble getting out of chair again. So I got> === message truncated === Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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