Guest guest Posted August 29, 2008 Report Share Posted August 29, 2008 Thank you. My husband was lucky and diagnosed within six months of his first symptoms. He has made much improvments but keeps saying how he is in a fog. I'm not sure if it is the steroids or the illness, It is nice to talk to others. None of his doctors have really treated NS before. , but from what I read it seems like they are on the right track. Thanks again --- jessicabouhamama wrote: > Welcome to the group, I hope you find the support > you need for you and your husband. We are a huge > family, and there for each other. > I was dxd with NS 2001. I was at deaths door when I > finally got dxd, and was on very large amounts of > steriods daily until I became toxic. I was in so > much pain in my head that I was getting shots of > Demoral 150mg 3 times per day to just numb the pain > and keep me from crying. Yes that 150mg is correct. > than finally after my 3rd spinal tap and angi-gram, > mri's biopsy's and on the verge of crashing for > good, I got my dxd and was started on plaquneil and > Imuran, with-in 3 months my wbc started to go back > to almost normal. > so 7 years later I've finally leveled off to where I > am holding my own. > so welcome again and blessings to your husband and > you. > in Pa > > > > In a message dated 08/28/08 22:00:23 Eastern > Daylight Time, shadowme810@... writes: > Dana > I believe each case is a little different. I have > NS, for 3 years now. I am just starting to walk > though clumsy as I am. My NS affected the right > side of my body and is now only in the lower half. > I do have feeling and control of my limbs however > most of the time I can't tell where my feet are. I > know they are at the bottom of my legs. lol I > still get a little dizzy but take Meclazine (sp) as > I need it. > I have had my Prednisone lowered to 5 mg a day and > they are going to try and take me off all together. > I do take plaquinel and Methotrexate. I hope for a > normal life too but who knows what normal is > anymore. The best I believe I will have is as > active as I can get. I walk, with walker, I > sometimes use a wheelchair. I drive and do > everything by myself. I feel blessed because I am > here and able to try to improve. I was a biker babe > and I know I will never ride again unless I get an > expensive 3 wheeler. Who knows. > You will adapt and hopefully your husband will > become stronger. I pray he does. Just don't give > up. > Jackie from Wisconsin. > [sPAM] Re: neuro. > > > > My husband was just diagnosised one month ago. > Thanks for your email. > It is the first sign of hope I have recieved since > joining. He is on 8 > mg of decadron a day. He is going crasy because > there is no sleep. > Anyone have any luck with getting sleep. He already > takes ambien and > xanax. How long before they start cutting down on > the steriods. He is > starting Remicaid but has to miss his next infusion > because of a virus. > Is ther hope for some kind of normal life. > > Dana > > > > > i have neuro. it took 7 yrs. to diagnose what i > have after a biopsy. > in > > certain ways i feel lucky because things could be > worse. my symptoms > > were blurry vision, slurred speech, numbness in > face, arms & hands, > > confusion, loss sense or direction, loss of > memory, headaches. the > good > > news is ive gone from 60mg prednisone daily to 20 > mg. lost 45lbs. and > > have a little stamina.to all of you out there my > prayers are with you > > all. but remember without God there's no strength > without stregnth > > there's no victory. stay strong! > > > > Royce > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2008 Report Share Posted August 30, 2008 Actually, it could be either. Steroids are pretty strong stuff and can cause a lot of side effects. But the sarc itself may contribute to the "brain fog" . It's one of the symptoms we have to put up with unless it's improved by med(s). I know a couple of people on the list who have talked about the improvement of the brain fog while being on Remicade. I tried it but had a reaction with my white cell count (went way too low) and they took me off all immune suppressive meds. including methotrexate. I wasn't too happy and ended up depressed. Well, sorry to lay all that out for you. Hope your husband is feeling better.. Debbie Co-Moderator> Welcome to the group, I hope you find the support> you need for you and your husband. We are a huge> family, and there for each other.> I was dxd with NS 2001. I was at deaths door when I> finally got dxd, and was on very large amounts of> steriods daily until I became toxic. I was in so> much pain in my head that I was getting shots of> Demoral 150mg 3 times per day to just numb the pain> and keep me from crying. Yes that 150mg is correct. > than finally after my 3rd spinal tap and angi-gram,> mri's biopsy's and on the verge of crashing for> good, I got my dxd and was started on plaquneil and> Imuran, with-in 3 months my wbc started to go back> to almost normal. > so 7 years later I've finally leveled off to where I> am holding my own. > so welcome again and blessings to your husband and> you.> in Pa> > > > In a message dated 08/28/08 22:00:23 Eastern> Daylight Time, shadowme810@ verizon.net writes:> Dana> I believe each case is a little different. I have> NS, for 3 years now. I am just starting to walk> though clumsy as I am. My NS affected the right> side of my body and is now only in the lower half. > I do have feeling and control of my limbs however> most of the time I can't tell where my feet are. I> know they are at the bottom of my legs. lol I> still get a little dizzy but take Meclazine (sp) as> I need it.> I have had my Prednisone lowered to 5 mg a day and> they are going to try and take me off all together. > I do take plaquinel and Methotrexate. I hope for a> normal life too but who knows what normal is> anymore. The best I believe I will have is as> active as I can get. I walk, with walker, I> sometimes use a wheelchair. I drive and do> everything by myself. I feel blessed because I am> here and able to try to improve. I was a biker babe> and I know I will never ride again unless I get an> expensive 3 wheeler. Who knows. > You will adapt and hopefully your husband will> become stronger. I pray he does. Just don't give> up.> Jackie from Wisconsin.> [sPAM][Neurosarcoid osis] Re: neuro.> > > > My husband was just diagnosised one month ago.> Thanks for your email. > It is the first sign of hope I have recieved since> joining. He is on 8> mg of decadron a day. He is going crasy because> there is no sleep. > Anyone have any luck with getting sleep. He already> takes ambien and> xanax. How long before they start cutting down on> the steriods. He is> starting Remicaid but has to miss his next infusion> because of a virus. > Is ther hope for some kind of normal life.> > Dana> > >> > i have neuro. it took 7 yrs. to diagnose what i> have after a biopsy.> in> > certain ways i feel lucky because things could be> worse. my symptoms> > were blurry vision, slurred speech, numbness in> face, arms & hands,> > confusion, loss sense or direction, loss of> memory, headaches. the> good> > news is ive gone from 60mg prednisone daily to 20> mg. lost 45lbs. and> > have a little stamina.to all of you out there my> prayers are with you> > all. but remember without God there's no strength> without stregnth> > there's no victory. stay strong!> >> > Royce> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2008 Report Share Posted August 30, 2008 Hi Dana, We all have different stories to tell, it wasn't until I started the Remicade that my brain fog lifted, I knew I was in a brain fog, but had no idea how bad it was until I started the Remicade, so hopefully that will work for your husband too. Marl a Thank you. My husband was lucky and diagnosed within six months of his first symptoms. He has made much improvments but keeps saying how he is in a fog. I'm not sure if it is the steroids or the illness, It is nice to talk to others. None of his doctors have really treated NS before. , but from what I read it seems like they are on the right track. Thanks again --- jessicabouhamama wrote: > Welcome to the group, I hope you find the support > you need for you and your husband. We are a huge > family, and there for each other. > I was dxd with NS 2001. I was at deaths door when I > finally got dxd, and was on very large amounts of > steriods daily until I became toxic. I was in so > much pain in my head that I was getting shots of > Demoral 150mg 3 times per day to just numb the pain > and keep me from crying. Yes that 150mg is correct. > than finally after my 3rd spinal tap and angi-gram, > mri's biopsy's and on the verge of crashing for > good, I got my dxd and was started on plaquneil and > Imuran, with-in 3 months my wbc started to go back > to almost normal. > so 7 years later I've finally leveled off to where I > am holding my own. > so welcome again and blessings to your husband and > you. > in Pa > > > > In a message dated 08/28/08 22:00:23 Eastern > Daylight Time, shadowme810@... writes: > Dana > I believe each case is a little different. I have > NS, for 3 years now. I am just starting to walk > though clumsy as I am. My NS affected the right > side of my body and is now only in the lower half. > I do have feeling and control of my limbs however > most of the time I can't tell where my feet are. I > know they are at the bottom of my legs. lol I > still get a little dizzy but take Meclazine (sp) as > I need it. > I have had my Prednisone lowered to 5 mg a day and > they are going to try and take me off all together. > I do take plaquinel and Methotrexate. I hope for a > normal life too but who knows what normal is > anymore. The best I believe I will have is as > active as I can get. I walk, with walker, I > sometimes use a wheelchair. I drive and do > everything by myself. I feel blessed because I am > here and able to try to improve. I was a biker babe > and I know I will never ride again unless I get an > expensive 3 wheeler. Who knows. > You will adapt and hopefully your husband will > become stronger. I pray he does. Just don't give > up. > Jackie from Wisconsin. > [sPAM] Re: neuro. > > > > My husband was just diagnosised one month ago. > Thanks for your email. > It is the first sign of hope I have recieved since > joining. He is on 8 > mg of decadron a day. He is going crasy because > there is no sleep. > Anyone have any luck with getting sleep. He already > takes ambien and > xanax. How long before they start cutting down on > the steriods. He is > starting Remicaid but has to miss his next infusion > because of a virus. > Is ther hope for some kind of normal life. > > Dana > > > > > i have neuro. it took 7 yrs. to diagnose what i > have after a biopsy. > in > > certain ways i feel lucky because things could be > worse. my symptoms > > were blurry vision, slurred speech, numbness in > face, arms & hands, > > confusion, loss sense or direction, loss of > memory, headaches. the > good > > news is ive gone from 60mg prednisone daily to 20 > mg. lost 45lbs. and > > have a little stamina.to all of you out there my > prayers are with you > > all. but remember without God there's no strength > without stregnth > > there's no victory. stay strong! > > > > Royce > > > > > > -- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 very good, very happy for you,hope the good keeps coming> Welcome to the group, I hope you find the support> you need for you and your husband. We are a huge> family, and there for each other.> I was dxd with NS 2001. I was at deaths door when I> finally got dxd, and was on very large amounts of> steriods daily until I became toxic. I was in so> much pain in my head that I was getting shots of> Demoral 150mg 3 times per day to just numb the pain> and keep me from crying. Yes that 150mg is correct. > than finally after my 3rd spinal tap and angi-gram,> mri's biopsy's and on the verge of crashing for> good, I got my dxd and was started on plaquneil and> Imuran, with-in 3 months my wbc started to go back> to almost normal. > so 7 years later I've finally leveled off to where I> am holding my own. > so welcome again and blessings to your husband and> you.> in Pa> > > > In a message dated 08/28/08 22:00:23 Eastern> Daylight Time, shadowme810@ verizon.net writes:> Dana> I believe each case is a little different. I have> NS, for 3 years now. I am just starting to walk> though clumsy as I am. My NS affected the right> side of my body and is now only in the lower half. > I do have feeling and control of my limbs however> most of the time I can't tell where my feet are. I> know they are at the bottom of my legs. lol I> still get a little dizzy but take Meclazine (sp) as> I need it.> I have had my Prednisone lowered to 5 mg a day and> they are going to try and take me off all together. > I do take plaquinel and Methotrexate. I hope for a> normal life too but who knows what normal is> anymore. The best I believe I will have is as> active as I can get. I walk, with walker, I> sometimes use a wheelchair. I drive and do> everything by myself. I feel blessed because I am> here and able to try to improve. I was a biker babe> and I know I will never ride again unless I get an> expensive 3 wheeler. Who knows. > You will adapt and hopefully your husband will> become stronger. I pray he does. Just don't give> up.> Jackie from Wisconsin.> [sPAM][Neurosarcoid osis] Re: neuro.> > > > My husband was just diagnosised one month ago.> Thanks for your email. > It is the first sign of hope I have recieved since> joining. He is on 8> mg of decadron a day. He is going crasy because> there is no sleep. > Anyone have any luck with getting sleep. He already> takes ambien and> xanax. How long before they start cutting down on> the steriods. He is> starting Remicaid but has to miss his next infusion> because of a virus. > Is ther hope for some kind of normal life.> > Dana> > >> > i have neuro. it took 7 yrs. to diagnose what i> have after a biopsy.> in> > certain ways i feel lucky because things could be> worse. my symptoms> > were blurry vision, slurred speech, numbness in> face, arms & hands,> > confusion, loss sense or direction, loss of> memory, headaches. the> good> > news is ive gone from 60mg prednisone daily to 20> mg. lost 45lbs. and> > have a little stamina.to all of you out there my> prayers are with you> > all. but remember without God there's no strength> without stregnth> > there's no victory. stay strong!> >> > Royce> >> > > > -- Marla Bramer Independent Beauty Consultant Kaymbramer (AT) marykay (DOT) com www.marykay. com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
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