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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

> >

>

>

>

>

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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>

>> > > >

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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

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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

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