Re: MS or NS?

[Guest guest]

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 an

> IV of 500 mg of

> solumedrol. Again, he cannot say whether it is NS or

> MS but he

> always tells me to go to the MS events etc. I have

> to call him today

> to let him know how I am doing.

>

> I realize alot of you are on different treatments.

> Has anyone been

> successful totally on solumedrol and going beyond 6

> weeks for an IV?

> I have been grateful as everything has been working,

> I have been

> doing everything my coach tells me, eating

> differently, vitamins

> regime he has me on, fish oil, probiotics,

> meditation, yoga for ms

> classes, and resting. The only thing different was

> that darn email

> from my daughter which I handled quite well I

> thought but maybe it

> stressed me out.

>

> Thanks for any information you can offer.

> Kathy

>

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

[Guest guest]

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 an

> IV of 500 mg of

> solumedrol. Again, he cannot say whether it is NS or

> MS but he

> always tells me to go to the MS events etc. I have

> to call him today

> to let him know how I am doing.

>

> I realize alot of you are on different treatments.

> Has anyone been

> successful totally on solumedrol and going beyond 6

> weeks for an IV?

> I have been grateful as everything has been working,

> I have been

> doing everything my coach tells me, eating

> differently, vitamins

> regime he has me on, fish oil, probiotics,

> meditation, yoga for ms

> classes, and resting. The only thing different was

> that darn email

> from my daughter which I handled quite well I

> thought but maybe it

> stressed me out.

>

> Thanks for any information you can offer.

> Kathy

>

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

[Guest guest]

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,Ricktracie feldhaus wrote: Cathy, MS has specific protein bands in the spinal fluid thatisn't there with NS.NS is a diagnosis of elimination-- when they'vefigured out that you don't have Lupus, MS, or any ofthe other auto-immune diseases-- and they've been ableto ascertain that you do have sarcoidosis (hopefullybiopsy proven)-- then you are left with NS.

Since you have a lung full of tumors-- it would reallybe beneficial for you to have a bronchoscopy so thatthey can take biopsies from the lungs and bronchials. That would be the easiest on you-- and it would firmup their suspicions.One of the other great tests for those of us thatdon't have granulomas on the brain (NS can betransient in it's symptoms because often we havevasculitis) is Neuropsych testing.Each test requires the a specific part of the brain toget the signals firing correctly for you to be able todo the test-- and if you can't do it-- then they knowwhat part is being effected. For many of us it seemsto like the frontal lobe--where the short term memory,personality, sexuality, common sense, problem solvingcenter is- (Executive functions area). That is one of the primary reasons I can no longerwork-- get me 'more' tired, or put me in a situationthat requires I multi-task-- and I'm

toast. Prior tothe combination I'm now on-- I couldn't have told youwhere I'd park my car when shopping-- and I had gottento a place where in my mind the bills were paid-- butI'd yet to write the checks. I also find I can'talways follow the recipes to make even a box ofbrownies-- I end up with the mix in the baking dish--and can't figure out how to get it mixed up. Stufflike that-- but since I was working for the phone coand had to use 6 computer screens simualtaneously foreach call-- that was out. I'd spent 17 yrs in medicaladmin-- and that was also gone-- docs don't like youscrewing up million dollar practices....Wow-- I hope I answered your questions.BLessings,TracieNS 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 an> IV of 500 mg of > solumedrol. Again, he cannot say whether it is NS or> MS but he > always tells me to go to the MS events etc. I have> to call him today > to let him know how I am doing.> > I realize alot of you are on different treatments.> Has anyone been > successful totally on solumedrol and going beyond 6> weeks for an IV? > I have been grateful as everything has been working,> I

have been > doing everything my coach tells me, eating> differently, vitamins > regime he has me on, fish oil, probiotics,> meditation, yoga for ms > classes, and resting. The only thing different was> that darn email > from my daughter which I handled quite well I> thought but maybe it > stressed me out. > > Thanks for any information you can offer.> Kathy> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

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,Ricktracie feldhaus wrote: Cathy, MS has specific protein bands in the spinal fluid thatisn't there with NS.NS is a diagnosis of elimination-- when they'vefigured out that you don't have Lupus, MS, or any ofthe other auto-immune diseases-- and they've been ableto ascertain that you do have sarcoidosis (hopefullybiopsy proven)-- then you are left with NS.

Since you have a lung full of tumors-- it would reallybe beneficial for you to have a bronchoscopy so thatthey can take biopsies from the lungs and bronchials. That would be the easiest on you-- and it would firmup their suspicions.One of the other great tests for those of us thatdon't have granulomas on the brain (NS can betransient in it's symptoms because often we havevasculitis) is Neuropsych testing.Each test requires the a specific part of the brain toget the signals firing correctly for you to be able todo the test-- and if you can't do it-- then they knowwhat part is being effected. For many of us it seemsto like the frontal lobe--where the short term memory,personality, sexuality, common sense, problem solvingcenter is- (Executive functions area). That is one of the primary reasons I can no longerwork-- get me 'more' tired, or put me in a situationthat requires I multi-task-- and I'm

toast. Prior tothe combination I'm now on-- I couldn't have told youwhere I'd park my car when shopping-- and I had gottento a place where in my mind the bills were paid-- butI'd yet to write the checks. I also find I can'talways follow the recipes to make even a box ofbrownies-- I end up with the mix in the baking dish--and can't figure out how to get it mixed up. Stufflike that-- but since I was working for the phone coand had to use 6 computer screens simualtaneously foreach call-- that was out. I'd spent 17 yrs in medicaladmin-- and that was also gone-- docs don't like youscrewing up million dollar practices....Wow-- I hope I answered your questions.BLessings,TracieNS 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 an> IV of 500 mg of > solumedrol. Again, he cannot say whether it is NS or> MS but he > always tells me to go to the MS events etc. I have> to call him today > to let him know how I am doing.> > I realize alot of you are on different treatments.> Has anyone been > successful totally on solumedrol and going beyond 6> weeks for an IV? > I have been grateful as everything has been working,> I

have been > doing everything my coach tells me, eating> differently, vitamins > regime he has me on, fish oil, probiotics,> meditation, yoga for ms > classes, and resting. The only thing different was> that darn email > from my daughter which I handled quite well I> thought but maybe it > stressed me out. > > Thanks for any information you can offer.> Kathy> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

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

> an

> > IV of 500 mg of

> > solumedrol. Again, he cannot say whether it is NS

> or

> > MS but he

> > always tells me to go to the MS events etc. I have

> > to call him today

> > to let him know how I am doing.

> >

> > I realize alot of you are on different treatments.

> > Has anyone been

> > successful totally on solumedrol and going beyond

> 6

> > weeks for an IV?

> > I have been grateful as everything has been

> working,

> > I have been

> > doing everything my coach tells me, eating

> > differently, vitamins

> > regime he has me on, fish oil, probiotics,

> > meditation, yoga for ms

> > classes, and resting. The only thing different was

> > that darn email

> > from my daughter which I handled quite well I

> > thought but maybe it

> > stressed me out.

> >

> > Thanks for any information you can offer.

> > Kathy

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Be a better friend, newshound, and know-it-all

> with

> > Yahoo! Mobile. Try it now.

>

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

[Guest guest]

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

> an

> > IV of 500 mg of

> > solumedrol. Again, he cannot say whether it is NS

> or

> > MS but he

> > always tells me to go to the MS events etc. I have

> > to call him today

> > to let him know how I am doing.

> >

> > I realize alot of you are on different treatments.

> > Has anyone been

> > successful totally on solumedrol and going beyond

> 6

> > weeks for an IV?

> > I have been grateful as everything has been

> working,

> > I have been

> > doing everything my coach tells me, eating

> > differently, vitamins

> > regime he has me on, fish oil, probiotics,

> > meditation, yoga for ms

> > classes, and resting. The only thing different was

> > that darn email

> > from my daughter which I handled quite well I

> > thought but maybe it

> > stressed me out.

> >

> > Thanks for any information you can offer.

> > Kathy

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Be a better friend, newshound, and know-it-all

> with

> > Yahoo! Mobile. Try it now.

>

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

[Guest guest]

Tracie, They did do a bronchoscopy, but they did it after 5 days on IV decadron and so it didn't show any sarcoidosis. All of the doctors keep saying it is sarcoid and they ruled out all the other stuff, but everyone non medical I know keeps saying they think I have ms (including a friend who's daughter has ms). The first spinal tap they did in may 2007 the lab screwed up and forgot to do ace and other things. the second spinal tap in Sept 2007 was also done after 5 days of IV decadron. (I was admitted to the icu in my town and waiting for a bed at a bigger hospital for 5 days). So the neurologist then said she thought I had ns but she couldn't prove it because of the steroids i had recieved effected the lab results. the neurologist I have now in my town says he is sure it is ns, everything else has been ruled out, but at my last visit I was describing the progression of my ns symptoms since I saw him last and he asked me again about my original spinal tap

and the protien level--which to me sounded like he was thinking ms, but I was too tired to talk much more so I didn't ask him. As I read these emails I see people with sarcoid and ms diagnosis. It all just makes me wonder and confused. Thanks for being patient with me. Cathytracie feldhaus wrote: Cathy, MS has specific protein bands in the spinal fluid thatisn't there with NS.NS is a diagnosis of elimination-- when they'vefigured out that you don't have Lupus, MS, or any ofthe

other auto-immune diseases-- and they've been ableto ascertain that you do have sarcoidosis (hopefullybiopsy proven)-- then you are left with NS. Since you have a lung full of tumors-- it would reallybe beneficial for you to have a bronchoscopy so thatthey can take biopsies from the lungs and bronchials. That would be the easiest on you-- and it would firmup their suspicions.One of the other great tests for those of us thatdon't have granulomas on the brain (NS can betransient in it's symptoms because often we havevasculitis) is Neuropsych testing.Each test requires the a specific part of the brain toget the signals firing correctly for you to be able todo the test-- and if you can't do it-- then they knowwhat part is being effected. For many of us it seemsto like the frontal lobe--where the short term memory,personality, sexuality, common sense, problem solvingcenter is- (Executive functions area).

That is one of the primary reasons I can no longerwork-- get me 'more' tired, or put me in a situationthat requires I multi-task-- and I'm toast. Prior tothe combination I'm now on-- I couldn't have told youwhere I'd park my car when shopping-- and I had gottento a place where in my mind the bills were paid-- butI'd yet to write the checks. I also find I can'talways follow the recipes to make even a box ofbrownies-- I end up with the mix in the baking dish--and can't figure out how to get it mixed up. Stufflike that-- but since I was working for the phone coand had to use 6 computer screens simualtaneously foreach call-- that was out. I'd spent 17 yrs in medicaladmin-- and that was also gone-- docs don't like youscrewing up million dollar practices....Wow-- I hope I answered your questions.BLessings,TracieNS 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 an> IV of 500 mg of > solumedrol. Again, he cannot say whether it is NS or> MS but he > always tells me to go to the MS events etc. I have> to call him today > to let him know how I am doing.> > I realize alot of you are on different

treatments.> Has anyone been > successful totally on solumedrol and going beyond 6> weeks for an IV? > I have been grateful as everything has been working,> I have been > doing everything my coach tells me, eating> differently, vitamins > regime he has me on, fish oil, probiotics,> meditation, yoga for ms > classes, and resting. The only thing different was> that darn email > from my daughter which I handled quite well I> thought but maybe it > stressed me out. > > Thanks for any information you can offer.> Kathy> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Tracie, They did do a bronchoscopy, but they did it after 5 days on IV decadron and so it didn't show any sarcoidosis. All of the doctors keep saying it is sarcoid and they ruled out all the other stuff, but everyone non medical I know keeps saying they think I have ms (including a friend who's daughter has ms). The first spinal tap they did in may 2007 the lab screwed up and forgot to do ace and other things. the second spinal tap in Sept 2007 was also done after 5 days of IV decadron. (I was admitted to the icu in my town and waiting for a bed at a bigger hospital for 5 days). So the neurologist then said she thought I had ns but she couldn't prove it because of the steroids i had recieved effected the lab results. the neurologist I have now in my town says he is sure it is ns, everything else has been ruled out, but at my last visit I was describing the progression of my ns symptoms since I saw him last and he asked me again about my original spinal tap

and the protien level--which to me sounded like he was thinking ms, but I was too tired to talk much more so I didn't ask him. As I read these emails I see people with sarcoid and ms diagnosis. It all just makes me wonder and confused. Thanks for being patient with me. Cathytracie feldhaus wrote: Cathy, MS has specific protein bands in the spinal fluid thatisn't there with NS.NS is a diagnosis of elimination-- when they'vefigured out that you don't have Lupus, MS, or any ofthe

other auto-immune diseases-- and they've been ableto ascertain that you do have sarcoidosis (hopefullybiopsy proven)-- then you are left with NS. Since you have a lung full of tumors-- it would reallybe beneficial for you to have a bronchoscopy so thatthey can take biopsies from the lungs and bronchials. That would be the easiest on you-- and it would firmup their suspicions.One of the other great tests for those of us thatdon't have granulomas on the brain (NS can betransient in it's symptoms because often we havevasculitis) is Neuropsych testing.Each test requires the a specific part of the brain toget the signals firing correctly for you to be able todo the test-- and if you can't do it-- then they knowwhat part is being effected. For many of us it seemsto like the frontal lobe--where the short term memory,personality, sexuality, common sense, problem solvingcenter is- (Executive functions area).

That is one of the primary reasons I can no longerwork-- get me 'more' tired, or put me in a situationthat requires I multi-task-- and I'm toast. Prior tothe combination I'm now on-- I couldn't have told youwhere I'd park my car when shopping-- and I had gottento a place where in my mind the bills were paid-- butI'd yet to write the checks. I also find I can'talways follow the recipes to make even a box ofbrownies-- I end up with the mix in the baking dish--and can't figure out how to get it mixed up. Stufflike that-- but since I was working for the phone coand had to use 6 computer screens simualtaneously foreach call-- that was out. I'd spent 17 yrs in medicaladmin-- and that was also gone-- docs don't like youscrewing up million dollar practices....Wow-- I hope I answered your questions.BLessings,TracieNS 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 an> IV of 500 mg of > solumedrol. Again, he cannot say whether it is NS or> MS but he > always tells me to go to the MS events etc. I have> to call him today > to let him know how I am doing.> > I realize alot of you are on different

treatments.> Has anyone been > successful totally on solumedrol and going beyond 6> weeks for an IV? > I have been grateful as everything has been working,> I have been > doing everything my coach tells me, eating> differently, vitamins > regime he has me on, fish oil, probiotics,> meditation, yoga for ms > classes, and resting. The only thing different was> that darn email > from my daughter which I handled quite well I> thought but maybe it > stressed me out. > > Thanks for any information you can offer.> Kathy> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

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[Guest guest]

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. Ricktracie feldhaus wrote: Rick, The best thing I did for my memory loss was thePlaquenil. That and we eliminated (I

eliminated) theAmbien. One of the major side effects of daily use ofsleep aids was short-term memory loss.However, even with it gone, I flunked the Neuropsychtests that confirm short term memory and problemsolving. I've found that playing Scrabble online, and Majongonline are really helpful for my keeping my brain more'flexible.' But I also find that I become almost tothe point of being obsessed with the games and can'tpull myself away-- and that has never been a problembefore.TracieNS 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> an> > IV of 500 mg of > > solumedrol. Again, he cannot say whether it is NS> or> > MS but he > > always tells me to go to the MS events etc. I have> > to call him today > > to let him know how I am doing.> > > > I realize alot of you are on different treatments.> > Has anyone been > > successful totally on solumedrol and

going beyond> 6> > weeks for an IV? > > I have been grateful as everything has been> working,> > I have been > > doing everything my coach tells me, eating> > differently, vitamins > > regime he has me on, fish oil, probiotics,> > meditation, yoga for ms > > classes, and resting. The only thing different was> > that darn email > > from my daughter which I handled quite well I> > thought but maybe it > > stressed me out. > > > > Thanks for any information you can offer.> > Kathy> > > > > > > > > > > > > > ---------------------------------> > Be a better friend, newshound, and know-it-all> with> > Yahoo! Mobile. Try it now.> > > > > > >

---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

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. Ricktracie feldhaus wrote: Rick, The best thing I did for my memory loss was thePlaquenil. That and we eliminated (I

eliminated) theAmbien. One of the major side effects of daily use ofsleep aids was short-term memory loss.However, even with it gone, I flunked the Neuropsychtests that confirm short term memory and problemsolving. I've found that playing Scrabble online, and Majongonline are really helpful for my keeping my brain more'flexible.' But I also find that I become almost tothe point of being obsessed with the games and can'tpull myself away-- and that has never been a problembefore.TracieNS 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> an> > IV of 500 mg of > > solumedrol. Again, he cannot say whether it is NS> or> > MS but he > > always tells me to go to the MS events etc. I have> > to call him today > > to let him know how I am doing.> > > > I realize alot of you are on different treatments.> > Has anyone been > > successful totally on solumedrol and

going beyond> 6> > weeks for an IV? > > I have been grateful as everything has been> working,> > I have been > > doing everything my coach tells me, eating> > differently, vitamins > > regime he has me on, fish oil, probiotics,> > meditation, yoga for ms > > classes, and resting. The only thing different was> > that darn email > > from my daughter which I handled quite well I> > thought but maybe it > > stressed me out. > > > > Thanks for any information you can offer.> > Kathy> > > > > > > > > > > > > > ---------------------------------> > Be a better friend, newshound, and know-it-all> with> > Yahoo! Mobile. Try it now.> > > > > > >

---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Tracie, I just looked up my old lab values and my protien levels were normal in both spinal taps. Guess that's why they said no ms. Guess the symptoms are just very similar in some ways. Thanks Cathytracie feldhaus wrote: Cathy, MS has specific protein bands in the spinal fluid thatisn't there with NS.NS is a diagnosis of elimination-- when they'vefigured out that you don't have Lupus, MS, or any ofthe other auto-immune diseases-- and they've been

ableto ascertain that you do have sarcoidosis (hopefullybiopsy proven)-- then you are left with NS. Since you have a lung full of tumors-- it would reallybe beneficial for you to have a bronchoscopy so thatthey can take biopsies from the lungs and bronchials. That would be the easiest on you-- and it would firmup their suspicions.One of the other great tests for those of us thatdon't have granulomas on the brain (NS can betransient in it's symptoms because often we havevasculitis) is Neuropsych testing.Each test requires the a specific part of the brain toget the signals firing correctly for you to be able todo the test-- and if you can't do it-- then they knowwhat part is being effected. For many of us it seemsto like the frontal lobe--where the short term memory,personality, sexuality, common sense, problem solvingcenter is- (Executive functions area). That is one of the primary reasons I can no

longerwork-- get me 'more' tired, or put me in a situationthat requires I multi-task-- and I'm toast. Prior tothe combination I'm now on-- I couldn't have told youwhere I'd park my car when shopping-- and I had gottento a place where in my mind the bills were paid-- butI'd yet to write the checks. I also find I can'talways follow the recipes to make even a box ofbrownies-- I end up with the mix in the baking dish--and can't figure out how to get it mixed up. Stufflike that-- but since I was working for the phone coand had to use 6 computer screens simualtaneously foreach call-- that was out. I'd spent 17 yrs in medicaladmin-- and that was also gone-- docs don't like youscrewing up million dollar practices....Wow-- I hope I answered your questions.BLessings,TracieNS 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 an> IV of 500 mg of > solumedrol. Again, he cannot say whether it is NS or> MS but he > always tells me to go to the MS events etc. I have> to call him today > to let him know how I am doing.> > I realize alot of you are on different treatments.> Has anyone been > successful totally on solumedrol and going

beyond 6> weeks for an IV? > I have been grateful as everything has been working,> I have been > doing everything my coach tells me, eating> differently, vitamins > regime he has me on, fish oil, probiotics,> meditation, yoga for ms > classes, and resting. The only thing different was> that darn email > from my daughter which I handled quite well I> thought but maybe it > stressed me out. > > Thanks for any information you can offer.> Kathy> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

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Tracie, I just looked up my old lab values and my protien levels were normal in both spinal taps. Guess that's why they said no ms. Guess the symptoms are just very similar in some ways. Thanks Cathytracie feldhaus wrote: Cathy, MS has specific protein bands in the spinal fluid thatisn't there with NS.NS is a diagnosis of elimination-- when they'vefigured out that you don't have Lupus, MS, or any ofthe other auto-immune diseases-- and they've been

ableto ascertain that you do have sarcoidosis (hopefullybiopsy proven)-- then you are left with NS. Since you have a lung full of tumors-- it would reallybe beneficial for you to have a bronchoscopy so thatthey can take biopsies from the lungs and bronchials. That would be the easiest on you-- and it would firmup their suspicions.One of the other great tests for those of us thatdon't have granulomas on the brain (NS can betransient in it's symptoms because often we havevasculitis) is Neuropsych testing.Each test requires the a specific part of the brain toget the signals firing correctly for you to be able todo the test-- and if you can't do it-- then they knowwhat part is being effected. For many of us it seemsto like the frontal lobe--where the short term memory,personality, sexuality, common sense, problem solvingcenter is- (Executive functions area). That is one of the primary reasons I can no

longerwork-- get me 'more' tired, or put me in a situationthat requires I multi-task-- and I'm toast. Prior tothe combination I'm now on-- I couldn't have told youwhere I'd park my car when shopping-- and I had gottento a place where in my mind the bills were paid-- butI'd yet to write the checks. I also find I can'talways follow the recipes to make even a box ofbrownies-- I end up with the mix in the baking dish--and can't figure out how to get it mixed up. Stufflike that-- but since I was working for the phone coand had to use 6 computer screens simualtaneously foreach call-- that was out. I'd spent 17 yrs in medicaladmin-- and that was also gone-- docs don't like youscrewing up million dollar practices....Wow-- I hope I answered your questions.BLessings,TracieNS 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 an> IV of 500 mg of > solumedrol. Again, he cannot say whether it is NS or> MS but he > always tells me to go to the MS events etc. I have> to call him today > to let him know how I am doing.> > I realize alot of you are on different treatments.> Has anyone been > successful totally on solumedrol and going

beyond 6> weeks for an IV? > I have been grateful as everything has been working,> I have been > doing everything my coach tells me, eating> differently, vitamins > regime he has me on, fish oil, probiotics,> meditation, yoga for ms > classes, and resting. The only thing different was> that darn email > from my daughter which I handled quite well I> thought but maybe it > stressed me out. > > Thanks for any information you can offer.> Kathy> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

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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! CathyRick 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. Ricktracie feldhaus <tiodaat (AT) att (DOT) net> wrote: Rick, The best thing I did for my memory loss was thePlaquenil. That and we eliminated (I eliminated) theAmbien. One of the major side effects of daily use ofsleep aids was short-term memory loss.However, even with it gone, I flunked the Neuropsychtests that confirm short term memory and problemsolving. I've found that playing Scrabble online, and Majongonline are really helpful for my keeping my brain more'flexible.' But I also find that I become almost tothe point of being obsessed with the games and can'tpull myself away-- and that has never been a problembefore.TracieNS 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> an> > IV of 500 mg of > >

solumedrol. Again, he cannot say whether it is NS> or> > MS but he > > always tells me to go to the MS events etc. I have> > to call him today > > to let him know how I am doing.> > > > I realize alot of you are on different treatments.> > Has anyone been > > successful totally on solumedrol and going beyond> 6> > weeks for an IV? > > I have been grateful as everything has been> working,> > I have been > > doing everything my coach tells me, eating> > differently, vitamins > > regime he has me on, fish oil, probiotics,> > meditation, yoga for ms > > classes, and resting. The only thing different was> > that darn email > > from my daughter which I handled quite well I> > thought but maybe it > > stressed me out. > > > > Thanks for any

information you can offer.> > Kathy> > > > > > > > > > > > > > ---------------------------------> > Be a better friend, newshound, and know-it-all> with> > Yahoo! Mobile. Try it now.> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage.

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[Guest guest]

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! CathyRick 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. Ricktracie feldhaus <tiodaat (AT) att (DOT) net> wrote: Rick, The best thing I did for my memory loss was thePlaquenil. That and we eliminated (I eliminated) theAmbien. One of the major side effects of daily use ofsleep aids was short-term memory loss.However, even with it gone, I flunked the Neuropsychtests that confirm short term memory and problemsolving. I've found that playing Scrabble online, and Majongonline are really helpful for my keeping my brain more'flexible.' But I also find that I become almost tothe point of being obsessed with the games and can'tpull myself away-- and that has never been a problembefore.TracieNS 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> an> > IV of 500 mg of > >

solumedrol. Again, he cannot say whether it is NS> or> > MS but he > > always tells me to go to the MS events etc. I have> > to call him today > > to let him know how I am doing.> > > > I realize alot of you are on different treatments.> > Has anyone been > > successful totally on solumedrol and going beyond> 6> > weeks for an IV? > > I have been grateful as everything has been> working,> > I have been > > doing everything my coach tells me, eating> > differently, vitamins > > regime he has me on, fish oil, probiotics,> > meditation, yoga for ms > > classes, and resting. The only thing different was> > that darn email > > from my daughter which I handled quite well I> > thought but maybe it > > stressed me out. > > > > Thanks for any

information you can offer.> > Kathy> > > > > > > > > > > > > > ---------------------------------> > Be a better friend, newshound, and know-it-all> with> > Yahoo! Mobile. Try it now.> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage.

Never miss a thing. Make Yahoo your homepage.