Re: Methotrexate-a few more questions from Joan

[Guest guest]

I have one more question for all regarding MTX ... how long was it before you noticed any improvements or changes? I noticed a change (improvement) in my breathing within a couple of weeks (3) and when I had to stop it for 6 weeks when I got a serious lung infection-- I really noticed how much bone/muscle pain came back, as well my breathing REALLY went downhill. ... and what exactly is the MTX supposed to do? .It works by blocking the production of the cells that for us create granulomas. For RA patients, it helps to stop the inflammation and wear and tear of cartlidge against cartlidge-- something that also is addressed in us. .. I read it alters cells, but how does that slow down our immune systems? .The cells it alters/blocks are the blood cells that would have congregated somewhere and built up into granulomas... Has anyone's pain levels gone down with MTX? .Yes, although I questioned how much until I had to stop taking it for a while. Sick or not, I'm not going off it again-- I can't handle the pain of regression. Even if I'm just a day late taking it, I notice my pain level increase. .. I'm very curious at all and anything--anything at all-- that anyone can add as to what it is supposed to do.

Next time you're in your MD's office, see if they have a copy of Arthritis Today-- Jan/Feb. issue. It has all the drugs used to treat inflammatory diseases, and really explains MTX and the other choices. I always pick up the copies at the Rheumatologist-- they get them free and he has many copies in his office for the taking. the website is: WWW.arthritis.org

MTX is what they call a DMARD. Disease Modifying Anti-Rheumatic Drug. It is supposed to help stop the destruction of tissues and joints caused by granulomas. It was originally used for cancers. We take an extremely low dose long term. Rare side effect-- liver disease, even more rare-- blood disease such as lymphoma. One way to help guard against liver problems, go for the shot instead of tablets. That way it bypasses the liver.

[Guest guest]

.... (I get frequent lung infections--am I going to have to stop taking it each time I get a lung infection?) TALK TO YOUR MD ABOUT THIS-- SHE MAY WANT YOU TO INITIALLY, BUT DOWN THE ROAD YOU MAY NOT NEED TO. I FIND THAT EVEN THO STAYING ON IT REQUIRES ANTIBIOTICS FOR A LONGER TIME, THAT I DO BETTER TO NOT STOP IT. and what exactly is the MTX supposed to do? .It works by blocking the production of the cells that for us create granulomas. (and what about the granulomas already there?) SHRINKS THEM.For RA patients, it helps to stop the inflammation and wear and tear of cartlidge against cartlidge-- something that also is addressed in us. (I still believe that is what was wrong with my ankle when they said it was fractured -- the dr. indicated the cartlidge tore and was floating, and that if it tears completely and/or starts pressing against the bone, it will require a simple surgery to add "fake" cartlidge ... now, mind you, this was my "interpretation" of what he said ... I could be completely way off base, but my other ankle hurts as badly as the broken ankle, and the original radiologist report indicated a possible "chronic" i HAVE THE SAME PROBLEM WITH MY ANKLE-- I ENDED UP BREAKING IT WHEN I WAS IN HIGH SCHOOL- IT WAS MISSED AS A SEVERE SPRAIN, NOW BETWEEN THE SARC GRANS (SPURS) AND THE FACT THAT IT WAS NEVER SET-- ITS FUSED IN SUCH A WAY THAT THE MOBILITY IS BEING MAJORALLY REDUCED. ADD WINTER COLDNESS--AND I WANT IT CUT OFF. .condition or a fracture) .. I read it alters cells, but how does that slow down our immune systems? .The cells it alters/blocks are the blood cells that would have congregated somewhere and built up into granulomas... (My interpretation and personal experience with this disease is that the sarc backs off when something "new" is introduced and begins to fight it, but it's as if the disease has a brain of its own and finds a way to sneak in past our current our current weapon with a stronger weapon of its own ... that's why no one really gets better ... just my view of it) EXACTLY Has anyone's pain levels gone down with MTX? .Yes, although I questioned how much until I had to stop taking it for a while. Sick or not, I'm not going off it again-- I can't handle the pain of regression. Even if I'm just a day late taking it, I notice my pain level increase. (can you stay on if forever?)..YES, AS LONG AS YOU TAKE THE FOLIC ACID RELIGIOUSLY TO KEEP FROM DEVELOPING PERNICIOUS ANEMIA, AND YOUR LIVER DOESN'T START SHOWING SIGNS OF TOXICITY. USE THE MILK THISTLE ALSO-- IT IS PROVEN TO REVERSE CIRRHOSIS AND LIVER CANCER. (One of my dearest friends who had Hodgkins as a child, developed liver, stomach cancer toward the end of her life-- had no liver toxicity and had researched milk thistle as directed by her oncologist-- it was that the scarring from being one of the first people to get "radiation" in the 60's when the dosage of radiation was still extremely high-- that actually took her life.) I'm very curious at all and anything--anything at all-- that anyone can add as to what it is supposed to do.

You take care of you!, if someone has a cure for the headache from hell-- let me know. oxygen isn't helping, neither are the drugs-- I think it's probably sarc vasculitis in my brain-- damn. I go to LA next week-- will see Dr. Sharma then-- I want him to do some ct's and mri of my brain, so we can get a better handle on the systemic stuff. (Please picture it happening.)

[Guest guest]

if someone has a cure for the headache from hell-- let me know. oxygen isn't helping, neither are the drugs-- I think it's probably sarc vasculitis in my brain-- damn. I go to LA next week-- will see Dr. Sharma then-- I want him to do some ct's and mri of my brain, so we can get a better handle on the systemic stuff. (Please picture it happening.) ...I'm picturing and praying!...Joan

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

[Guest guest]

> In a message dated 2/28/05 11:06:16 PM Pacific Standard Time,

> pickstands@a... writes:

>

>

> >

> > >>

> >> >>> ... (I get frequent lung infections--am I going to have to

stop taking

> >>> it each time I get a lung infection?) TALK TO YOUR MD ABOUT

THIS-- SHE MAY

> >>> WANT YOU TO INITIALLY, BUT DOWN THE ROAD YOU MAY NOT NEED TO.

I FIND

THAT

> >>> EVEN THO STAYING ON IT REQUIRES ANTIBIOTICS FOR A LONGER TIME,

THAT I DO

> >>> BETTER TO NOT STOP IT. and what exactly is the MTX supposed

to do? .It

> >>> works by blocking the production of the cells that for us

create granulomas.

> >>> (and what about the granulomas already there?) SHRINKS THEM.For

RA patients,

> >>> it helps to stop the inflammation and wear and tear of

cartlidge against

> >>> cartlidge-- something that also is addressed in us. (I still

believe that is

> >>> what was wrong with my ankle when they said it was fractured --

the dr.

> >>> indicated the cartlidge tore and was floating, and that if it

tears completely

> >>> and/or starts pressing against the bone, it will require a

simple surgery

> >>> to add " fake " cartlidge ... now, mind you, this was my

" interpretation " of

> >>> what he said ... I could be completely way off base, but my

other ankle

> >>> hurts as badly as the broken ankle, and the original

radiologist report

> >>> indicated a possible " chronic " i HAVE THE SAME PROBLEM WITH MY

ANKLE-- I

ENDED UP

> >>> BREAKING IT WHEN I WAS IN HIGH SCHOOL- IT WAS MISSED AS A

SEVERE SPRAIN,

> >>> NOW BETWEEN THE SARC GRANS (SPURS) AND THE FACT THAT IT WAS

NEVER

SET-- ITS

> >>> FUSED IN SUCH A WAY THAT THE MOBILITY IS BEING MAJORALLY

REDUCED. ADD

> >>> WINTER COLDNESS--AND I WANT IT CUT OFF. .condition or a

fracture) .. I read it

> >>> alters cells, but how does that slow down our immune systems?

..The cells it

> >>> alters/blocks are the blood cells that would have congregated

somewhere and

> >>> built up into granulomas... (My interpretation and personal

experience

> >>> with this disease is that the sarc backs off when something

" new " is

> >>> introduced and begins to fight it, but it's as if the disease

has a brain of its own

> >>> and finds a way to sneak in past our current our current weapon

with a

> >>> stronger weapon of its own ... that's why no one really gets

better ... just

> >>> my view of it) EXACTLY Has anyone's pain levels gone down with

MTX? .Yes,

> >>> although I questioned how much until I had to stop taking it

for a while.

> >>> Sick or not, I'm not going off it again-- I can't handle the

pain of

> >>> regression. Even if I'm just a day late taking it, I notice my

pain level increase.

> >>> (can you stay on if forever?)..YES, AS LONG AS YOU TAKE THE

FOLIC ACID

> >>> RELIGIOUSLY TO KEEP FROM DEVELOPING PERNICIOUS ANEMIA, AND YOUR

LIVER

DOESN'T

> >>> START SHOWING SIGNS OF TOXICITY. USE THE MILK THISTLE ALSO--

IT IS

> >>> PROVEN TO REVERSE CIRRHOSIS AND LIVER CANCER. (One of my

dearest friends

who

> >>> had Hodgkins as a child, developed liver, stomach cancer toward

the end of

> >>> her life-- had no liver toxicity and had researched milk

thistle as directed

> >>> by her oncologist-- it was that the scarring from being one of

the first

> >>> people to get " radiation " in the 60's when the dosage of

radiation was still

> >>> extremely high-- that actually took her life.) I'm very curious

at all and

> >>> anything--anything at all-- that anyone can add as to what it

is supposed

> >>> to do.

> >>

> >>

> >> You take care of you!, if someone has a cure for the headache

from hell--

> > let me know. oxygen isn't helping, neither are the drugs-- I

think it's

> > probably sarc vasculitis in my brain-- damn. I go to LA next

week-- will see Dr.

> > Sharma then-- I want him to do some ct's and mri of my brain, so

we can get a

> > better handle on the systemic stuff. (Please picture it

happening.)

Reply from belltown_mac 3-1-05

Having had the headache from hell last month I have a lot of sympathy

for you. I did find

that putting a cold cloth on my forehead did help, I had an MRI which

confirmed

nuerosarcodosis and was in the hospital for a week. They put me on

Prednisone and said

that it could take as long as three months for the headaches to

totally go away. Make sure

to be insistant that you want it looked into . I went to the

emergency room 3 times and

they kept saying that it was a migrine headache. I find that even

most doctors dont know

alot about Sarcoids so you have to be a strong advocate for yourself

to make sure you get

the proper medical treatment. Good luck with seeing Dr Sharma, I hear

he is one of the

best around.

[Guest guest]

> In a message dated 2/28/05 11:06:16 PM Pacific Standard Time,

> pickstands@a... writes:

>

>

> >

> > >>

> >> >>> ... (I get frequent lung infections--am I going to have to

stop taking

> >>> it each time I get a lung infection?) TALK TO YOUR MD ABOUT

THIS-- SHE MAY

> >>> WANT YOU TO INITIALLY, BUT DOWN THE ROAD YOU MAY NOT NEED TO.

I FIND

THAT

> >>> EVEN THO STAYING ON IT REQUIRES ANTIBIOTICS FOR A LONGER TIME,

THAT I DO

> >>> BETTER TO NOT STOP IT. and what exactly is the MTX supposed

to do? .It

> >>> works by blocking the production of the cells that for us

create granulomas.

> >>> (and what about the granulomas already there?) SHRINKS THEM.For

RA patients,

> >>> it helps to stop the inflammation and wear and tear of

cartlidge against

> >>> cartlidge-- something that also is addressed in us. (I still

believe that is

> >>> what was wrong with my ankle when they said it was fractured --

the dr.

> >>> indicated the cartlidge tore and was floating, and that if it

tears completely

> >>> and/or starts pressing against the bone, it will require a

simple surgery

> >>> to add " fake " cartlidge ... now, mind you, this was my

" interpretation " of

> >>> what he said ... I could be completely way off base, but my

other ankle

> >>> hurts as badly as the broken ankle, and the original

radiologist report

> >>> indicated a possible " chronic " i HAVE THE SAME PROBLEM WITH MY

ANKLE-- I

ENDED UP

> >>> BREAKING IT WHEN I WAS IN HIGH SCHOOL- IT WAS MISSED AS A

SEVERE SPRAIN,

> >>> NOW BETWEEN THE SARC GRANS (SPURS) AND THE FACT THAT IT WAS

NEVER

SET-- ITS

> >>> FUSED IN SUCH A WAY THAT THE MOBILITY IS BEING MAJORALLY

REDUCED. ADD

> >>> WINTER COLDNESS--AND I WANT IT CUT OFF. .condition or a

fracture) .. I read it

> >>> alters cells, but how does that slow down our immune systems?

..The cells it

> >>> alters/blocks are the blood cells that would have congregated

somewhere and

> >>> built up into granulomas... (My interpretation and personal

experience

> >>> with this disease is that the sarc backs off when something

" new " is

> >>> introduced and begins to fight it, but it's as if the disease

has a brain of its own

> >>> and finds a way to sneak in past our current our current weapon

with a

> >>> stronger weapon of its own ... that's why no one really gets

better ... just

> >>> my view of it) EXACTLY Has anyone's pain levels gone down with

MTX? .Yes,

> >>> although I questioned how much until I had to stop taking it

for a while.

> >>> Sick or not, I'm not going off it again-- I can't handle the

pain of

> >>> regression. Even if I'm just a day late taking it, I notice my

pain level increase.

> >>> (can you stay on if forever?)..YES, AS LONG AS YOU TAKE THE

FOLIC ACID

> >>> RELIGIOUSLY TO KEEP FROM DEVELOPING PERNICIOUS ANEMIA, AND YOUR

LIVER

DOESN'T

> >>> START SHOWING SIGNS OF TOXICITY. USE THE MILK THISTLE ALSO--

IT IS

> >>> PROVEN TO REVERSE CIRRHOSIS AND LIVER CANCER. (One of my

dearest friends

who

> >>> had Hodgkins as a child, developed liver, stomach cancer toward

the end of

> >>> her life-- had no liver toxicity and had researched milk

thistle as directed

> >>> by her oncologist-- it was that the scarring from being one of

the first

> >>> people to get " radiation " in the 60's when the dosage of

radiation was still

> >>> extremely high-- that actually took her life.) I'm very curious

at all and

> >>> anything--anything at all-- that anyone can add as to what it

is supposed

> >>> to do.

> >>

> >>

> >> You take care of you!, if someone has a cure for the headache

from hell--

> > let me know. oxygen isn't helping, neither are the drugs-- I

think it's

> > probably sarc vasculitis in my brain-- damn. I go to LA next

week-- will see Dr.

> > Sharma then-- I want him to do some ct's and mri of my brain, so

we can get a

> > better handle on the systemic stuff. (Please picture it

happening.)

Reply from belltown_mac 3-1-05

Having had the headache from hell last month I have a lot of sympathy

for you. I did find

that putting a cold cloth on my forehead did help, I had an MRI which

confirmed

nuerosarcodosis and was in the hospital for a week. They put me on

Prednisone and said

that it could take as long as three months for the headaches to

totally go away. Make sure

to be insistant that you want it looked into . I went to the

emergency room 3 times and

they kept saying that it was a migrine headache. I find that even

most doctors dont know

alot about Sarcoids so you have to be a strong advocate for yourself

to make sure you get

the proper medical treatment. Good luck with seeing Dr Sharma, I hear

he is one of the

best around.

[Guest guest]

> In a message dated 2/28/05 11:06:16 PM Pacific Standard Time,

> pickstands@a... writes:

>

>

> >

> > >>

> >> >>> ... (I get frequent lung infections--am I going to have to

stop taking

> >>> it each time I get a lung infection?) TALK TO YOUR MD ABOUT

THIS-- SHE MAY

> >>> WANT YOU TO INITIALLY, BUT DOWN THE ROAD YOU MAY NOT NEED TO.

I FIND

THAT

> >>> EVEN THO STAYING ON IT REQUIRES ANTIBIOTICS FOR A LONGER TIME,

THAT I DO

> >>> BETTER TO NOT STOP IT. and what exactly is the MTX supposed

to do? .It

> >>> works by blocking the production of the cells that for us

create granulomas.

> >>> (and what about the granulomas already there?) SHRINKS THEM.For

RA patients,

> >>> it helps to stop the inflammation and wear and tear of

cartlidge against

> >>> cartlidge-- something that also is addressed in us. (I still

believe that is

> >>> what was wrong with my ankle when they said it was fractured --

the dr.

> >>> indicated the cartlidge tore and was floating, and that if it

tears completely

> >>> and/or starts pressing against the bone, it will require a

simple surgery

> >>> to add " fake " cartlidge ... now, mind you, this was my

" interpretation " of

> >>> what he said ... I could be completely way off base, but my

other ankle

> >>> hurts as badly as the broken ankle, and the original

radiologist report

> >>> indicated a possible " chronic " i HAVE THE SAME PROBLEM WITH MY

ANKLE-- I

ENDED UP

> >>> BREAKING IT WHEN I WAS IN HIGH SCHOOL- IT WAS MISSED AS A

SEVERE SPRAIN,

> >>> NOW BETWEEN THE SARC GRANS (SPURS) AND THE FACT THAT IT WAS

NEVER

SET-- ITS

> >>> FUSED IN SUCH A WAY THAT THE MOBILITY IS BEING MAJORALLY

REDUCED. ADD

> >>> WINTER COLDNESS--AND I WANT IT CUT OFF. .condition or a

fracture) .. I read it

> >>> alters cells, but how does that slow down our immune systems?

..The cells it

> >>> alters/blocks are the blood cells that would have congregated

somewhere and

> >>> built up into granulomas... (My interpretation and personal

experience

> >>> with this disease is that the sarc backs off when something

" new " is

> >>> introduced and begins to fight it, but it's as if the disease

has a brain of its own

> >>> and finds a way to sneak in past our current our current weapon

with a

> >>> stronger weapon of its own ... that's why no one really gets

better ... just

> >>> my view of it) EXACTLY Has anyone's pain levels gone down with

MTX? .Yes,

> >>> although I questioned how much until I had to stop taking it

for a while.

> >>> Sick or not, I'm not going off it again-- I can't handle the

pain of

> >>> regression. Even if I'm just a day late taking it, I notice my

pain level increase.

> >>> (can you stay on if forever?)..YES, AS LONG AS YOU TAKE THE

FOLIC ACID

> >>> RELIGIOUSLY TO KEEP FROM DEVELOPING PERNICIOUS ANEMIA, AND YOUR

LIVER

DOESN'T

> >>> START SHOWING SIGNS OF TOXICITY. USE THE MILK THISTLE ALSO--

IT IS

> >>> PROVEN TO REVERSE CIRRHOSIS AND LIVER CANCER. (One of my

dearest friends

who

> >>> had Hodgkins as a child, developed liver, stomach cancer toward

the end of

> >>> her life-- had no liver toxicity and had researched milk

thistle as directed

> >>> by her oncologist-- it was that the scarring from being one of

the first

> >>> people to get " radiation " in the 60's when the dosage of

radiation was still

> >>> extremely high-- that actually took her life.) I'm very curious

at all and

> >>> anything--anything at all-- that anyone can add as to what it

is supposed

> >>> to do.

> >>

> >>

> >> You take care of you!, if someone has a cure for the headache

from hell--

> > let me know. oxygen isn't helping, neither are the drugs-- I

think it's

> > probably sarc vasculitis in my brain-- damn. I go to LA next

week-- will see Dr.

> > Sharma then-- I want him to do some ct's and mri of my brain, so

we can get a

> > better handle on the systemic stuff. (Please picture it

happening.)

Reply from belltown_mac 3-1-05

Having had the headache from hell last month I have a lot of sympathy

for you. I did find

that putting a cold cloth on my forehead did help, I had an MRI which

confirmed

nuerosarcodosis and was in the hospital for a week. They put me on

Prednisone and said

that it could take as long as three months for the headaches to

totally go away. Make sure

to be insistant that you want it looked into . I went to the

emergency room 3 times and

they kept saying that it was a migrine headache. I find that even

most doctors dont know

alot about Sarcoids so you have to be a strong advocate for yourself

to make sure you get

the proper medical treatment. Good luck with seeing Dr Sharma, I hear

he is one of the

best around.

[Guest guest]

Cherokee

good to see you posting! i hope things have went well

for you, i sent you an email a few days ago, and hope

you recieved it. let us know how you are doing and

how things went. take care, kim

--- A Cottingham wrote:

> If I had a cure for the headache from hell, believe

> me it would be yours. All I can say is hang in

> there. Sometimes for me, ice helps. But I really

> convinced the only thing that really helps is a new

> head!! Sorry, don't laugh it will only make your

> head hurt worse! Please know that I hope your pain

> will pass soon, We have all had these and they are

> no fun. I wish for you a night of blissful sleep.

>

> Cherokee

>

> pickstands@... wrote:

> In a message dated 3/1/2005 1:48:16 P.M. Eastern

> Standard Time, tiodaat@... writes:

> if someone has a cure for the headache from hell--

> let me know. oxygen isn't helping, neither are the

> drugs-- I think it's probably sarc vasculitis in my

> brain-- damn. I go to LA next week-- will see Dr.

> Sharma then-- I want him to do some ct's and mri of

> my brain, so we can get a better handle on the

> systemic stuff. (Please picture it happening.)

> ...I'm picturing and praying!...Joan

>

>

>

> " I believe that friends are quiet angels who lift us

> to our feet when our wings have trouble remembering

> how to fly. "

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

>

http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant

> messengers.

>

http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

>

[Guest guest]

, I didn't get your email. Please resend it. I have been okay. I took my doctors advice, at least the one I liked (lol), my husband and I went away for the weekend. While by body still hurts, my soul is better and my spirits are lifted. What a difference a change of scenery makes!!!

Cherokeekimberly alostad wrote:

Cherokeegood to see you posting! i hope things have went wellfor you, i sent you an email a few days ago, and hopeyou recieved it. let us know how you are doing andhow things went. take care, kim--- A Cottingham wrote:> If I had a cure for the headache from hell, believe> me it would be yours. All I can say is hang in> there. Sometimes for me, ice helps. But I really> convinced the only thing that really helps is a new> head!! Sorry, don't laugh it will only make your> head hurt worse! Please know that I hope your pain> will pass soon, We have all had these and they are> no fun. I wish for you a night of blissful sleep.> > Cherokee> > pickstands@... wrote:> In a message dated

3/1/2005 1:48:16 P.M. Eastern> Standard Time, tiodaat@... writes:> if someone has a cure for the headache from hell--> let me know. oxygen isn't helping, neither are the> drugs-- I think it's probably sarc vasculitis in my> brain-- damn. I go to LA next week-- will see Dr.> Sharma then-- I want him to do some ct's and mri of> my brain, so we can get a better handle on the> systemic stuff. (Please picture it happening.) > ...I'm picturing and praying!...Joan> > > > "I believe that friends are quiet angels who lift us> to our feet when our wings have trouble remembering> how to fly." > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:->http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant> messengers.>http://groups.yahoo.com/group/Neurosarcoidosis/database> > >

[Guest guest]

, I didn't get your email. Please resend it. I have been okay. I took my doctors advice, at least the one I liked (lol), my husband and I went away for the weekend. While by body still hurts, my soul is better and my spirits are lifted. What a difference a change of scenery makes!!!

Cherokeekimberly alostad wrote:

Cherokeegood to see you posting! i hope things have went wellfor you, i sent you an email a few days ago, and hopeyou recieved it. let us know how you are doing andhow things went. take care, kim--- A Cottingham wrote:> If I had a cure for the headache from hell, believe> me it would be yours. All I can say is hang in> there. Sometimes for me, ice helps. But I really> convinced the only thing that really helps is a new> head!! Sorry, don't laugh it will only make your> head hurt worse! Please know that I hope your pain> will pass soon, We have all had these and they are> no fun. I wish for you a night of blissful sleep.> > Cherokee> > pickstands@... wrote:> In a message dated

3/1/2005 1:48:16 P.M. Eastern> Standard Time, tiodaat@... writes:> if someone has a cure for the headache from hell--> let me know. oxygen isn't helping, neither are the> drugs-- I think it's probably sarc vasculitis in my> brain-- damn. I go to LA next week-- will see Dr.> Sharma then-- I want him to do some ct's and mri of> my brain, so we can get a better handle on the> systemic stuff. (Please picture it happening.) > ...I'm picturing and praying!...Joan> > > > "I believe that friends are quiet angels who lift us> to our feet when our wings have trouble remembering> how to fly." > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:->http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant> messengers.>http://groups.yahoo.com/group/Neurosarcoidosis/database> > >

[Guest guest]

Cherokee,

I am sorry you didnt get my email, I had sent it to

you privately but i didnt keep a copy of it. I was

just wandering how you were doing mostly....im having

a horrid day and will try to write more later. maybe

it went to your junk mail or something...take care,

Kim

--- A Cottingham wrote:

> , I didn't get your email. Please resend

> it. I have been okay. I took my doctors advice, at

> least the one I liked (lol), my husband and I went

> away for the weekend. While by body still hurts, my

> soul is better and my spirits are lifted. What a

> difference a change of scenery makes!!!

>

> Cherokee

>

> kimberly alostad wrote:

> Cherokee

>

> good to see you posting! i hope things have went

> well

> for you, i sent you an email a few days ago, and

> hope

> you recieved it. let us know how you are doing and

> how things went. take care, kim

>

> --- A Cottingham wrote:

>

> > If I had a cure for the headache from hell,

> believe

> > me it would be yours. All I can say is hang in

> > there. Sometimes for me, ice helps. But I really

> > convinced the only thing that really helps is a

> new

> > head!! Sorry, don't laugh it will only make your

> > head hurt worse! Please know that I hope your pain

> > will pass soon, We have all had these and they

> are

> > no fun. I wish for you a night of blissful sleep.

> >

> > Cherokee

> >

> > pickstands@... wrote:

> > In a message dated 3/1/2005 1:48:16 P.M. Eastern

> > Standard Time, tiodaat@... writes:

> > if someone has a cure for the headache from hell--

> > let me know. oxygen isn't helping, neither are

> the

> > drugs-- I think it's probably sarc vasculitis in

> my

> > brain-- damn. I go to LA next week-- will see Dr.

> > Sharma then-- I want him to do some ct's and mri

> of

> > my brain, so we can get a better handle on the

> > systemic stuff. (Please picture it happening.)

> > ...I'm picturing and praying!...Joan

> >

> >

> >

> > " I believe that friends are quiet angels who lift

> us

> > to our feet when our wings have trouble

> remembering

> > how to fly. "

> >

> >

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[Guest guest]

Cherokee,

I am sorry you didnt get my email, I had sent it to

you privately but i didnt keep a copy of it. I was

just wandering how you were doing mostly....im having

a horrid day and will try to write more later. maybe

it went to your junk mail or something...take care,

Kim

--- A Cottingham wrote:

> , I didn't get your email. Please resend

> it. I have been okay. I took my doctors advice, at

> least the one I liked (lol), my husband and I went

> away for the weekend. While by body still hurts, my

> soul is better and my spirits are lifted. What a

> difference a change of scenery makes!!!

>

> Cherokee

>

> kimberly alostad wrote:

> Cherokee

>

> good to see you posting! i hope things have went

> well

> for you, i sent you an email a few days ago, and

> hope

> you recieved it. let us know how you are doing and

> how things went. take care, kim

>

> --- A Cottingham wrote:

>

> > If I had a cure for the headache from hell,

> believe

> > me it would be yours. All I can say is hang in

> > there. Sometimes for me, ice helps. But I really

> > convinced the only thing that really helps is a

> new

> > head!! Sorry, don't laugh it will only make your

> > head hurt worse! Please know that I hope your pain

> > will pass soon, We have all had these and they

> are

> > no fun. I wish for you a night of blissful sleep.

> >

> > Cherokee

> >

> > pickstands@... wrote:

> > In a message dated 3/1/2005 1:48:16 P.M. Eastern

> > Standard Time, tiodaat@... writes:

> > if someone has a cure for the headache from hell--

> > let me know. oxygen isn't helping, neither are

> the

> > drugs-- I think it's probably sarc vasculitis in

> my

> > brain-- damn. I go to LA next week-- will see Dr.

> > Sharma then-- I want him to do some ct's and mri

> of

> > my brain, so we can get a better handle on the

> > systemic stuff. (Please picture it happening.)

> > ...I'm picturing and praying!...Joan

> >

> >

> >

> > " I believe that friends are quiet angels who lift

> us

> > to our feet when our wings have trouble

> remembering

> > how to fly. "

> >

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> > NS CHAT:- Has been cancelled for now.

> >

> > Message Archives:-

> >

>

http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant

> > messengers.

> >

>

http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

> >