looking for insight on prognosis

[Guest guest]

Hello, folks.

I am a lawyer, currently involved in a medical malpractice case on

behalf of a patient who had neurosarcoidosis before a failure to

treat hydrocephalus led to her death.

The hospital lawyers are suggesting, subtly, that the 28 year old

(who had only been diagnosed with the condition two months earlier)

was doomed to a very short life expectancy, or at least a life of

disability, and I am seeking empirical or anecdotal evidence to the

contrary.

It seemed to me that a group list like this might be the place to

start.

My thanks, and those of my client's family, for any help or

suggestions.

Geoff Waggoner

[Guest guest]

Geoff

I developed hydro and had shunt surgery in 1997. I

don't know if any of my info would be helpful to you

or the family but feel free to email me at my personal

email address.

grannylunatic@...

__________________________________________________

[Guest guest]

Geoff

I developed hydro and had shunt surgery in 1997. I

don't know if any of my info would be helpful to you

or the family but feel free to email me at my personal

email address.

grannylunatic@...

__________________________________________________

[Guest guest]

Hello from Iowa:) I enjoyed reading your post..and everything sounded perfect. My brother lives in Seattle Washington now..his wife is Physicians Assistant... so in the medical field as yourself..I'm really thankful for that...that is a support in itself. I talked to my mother today and told her how important I feel it is for my brother and even herself to talk to others who are experiencing samething...I so pray both do. My brother is now 39 years old...He was 37, right around there when diagnosed..they do not have any children and I doubt at this point and time they will..they were both busy in there proffessions and just put on hold..little do you know what your future has in store for you...My hats are off to you going through this and yet helping others..You sound like a wonderful lady Many hugs, .das97

wrote: Geoff WaggonerHi my name is , and I live in Iowa. I have been on disabilityfor about 4 years after being a LPN for about 9 or 10 years. I hopeyou win your case for this family, as having sarcoid doesn't mean thatwe are gonna waste away and crawl in a corner and die. Having sarcoidisn't a death sentence. Yes it could and most likely will end indeath for most of us, but people can live for years and years withsarcoidosis. Being on disability doesn't mean you have to give upeither. Your clients doctors say that she would have ended up ondisability, so what, I am on disability, and I volunteer at a localdomestic abuse shelter, and function just fine there. Not saying thatI don't have my bad days, but when those come around they work withme. Oh I would

rather be working as a LPN, cause the pay was muchbetter, but I can't so disabilty was the next best thing.I have trouble with organizing my thoughts into words, so I hope thisemail makes some sort of sense to you.Good Luck with this case, and please encourage the family to join usif they need support. from Iowa..>> > Hello, folks.> > I am a lawyer, currently involved in a medical malpractice case on > behalf of a patient who had neurosarcoidosis before a failure to > treat hydrocephalus led to her death.> > The hospital lawyers are suggesting, subtly, that the 28 year old > (who had only been diagnosed with the condition two months earlier) > was doomed to a very short life expectancy, or at least a life of > disability, and I am seeking empirical or anecdotal evidence to the > contrary. > > It seemed to me that a

group list like this might be the place to > start. > > My thanks, and those of my client's family, for any help or > suggestions.> > Geoff Waggoner>

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

Hello from Iowa:) I enjoyed reading your post..and everything sounded perfect. My brother lives in Seattle Washington now..his wife is Physicians Assistant... so in the medical field as yourself..I'm really thankful for that...that is a support in itself. I talked to my mother today and told her how important I feel it is for my brother and even herself to talk to others who are experiencing samething...I so pray both do. My brother is now 39 years old...He was 37, right around there when diagnosed..they do not have any children and I doubt at this point and time they will..they were both busy in there proffessions and just put on hold..little do you know what your future has in store for you...My hats are off to you going through this and yet helping others..You sound like a wonderful lady Many hugs, .das97

wrote: Geoff WaggonerHi my name is , and I live in Iowa. I have been on disabilityfor about 4 years after being a LPN for about 9 or 10 years. I hopeyou win your case for this family, as having sarcoid doesn't mean thatwe are gonna waste away and crawl in a corner and die. Having sarcoidisn't a death sentence. Yes it could and most likely will end indeath for most of us, but people can live for years and years withsarcoidosis. Being on disability doesn't mean you have to give upeither. Your clients doctors say that she would have ended up ondisability, so what, I am on disability, and I volunteer at a localdomestic abuse shelter, and function just fine there. Not saying thatI don't have my bad days, but when those come around they work withme. Oh I would

rather be working as a LPN, cause the pay was muchbetter, but I can't so disabilty was the next best thing.I have trouble with organizing my thoughts into words, so I hope thisemail makes some sort of sense to you.Good Luck with this case, and please encourage the family to join usif they need support. from Iowa..>> > Hello, folks.> > I am a lawyer, currently involved in a medical malpractice case on > behalf of a patient who had neurosarcoidosis before a failure to > treat hydrocephalus led to her death.> > The hospital lawyers are suggesting, subtly, that the 28 year old > (who had only been diagnosed with the condition two months earlier) > was doomed to a very short life expectancy, or at least a life of > disability, and I am seeking empirical or anecdotal evidence to the > contrary. > > It seemed to me that a

group list like this might be the place to > start. > > My thanks, and those of my client's family, for any help or > suggestions.> > Geoff Waggoner>

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

Hello from Iowa:) I enjoyed reading your post..and everything sounded perfect. My brother lives in Seattle Washington now..his wife is Physicians Assistant... so in the medical field as yourself..I'm really thankful for that...that is a support in itself. I talked to my mother today and told her how important I feel it is for my brother and even herself to talk to others who are experiencing samething...I so pray both do. My brother is now 39 years old...He was 37, right around there when diagnosed..they do not have any children and I doubt at this point and time they will..they were both busy in there proffessions and just put on hold..little do you know what your future has in store for you...My hats are off to you going through this and yet helping others..You sound like a wonderful lady Many hugs, .das97

wrote: Geoff WaggonerHi my name is , and I live in Iowa. I have been on disabilityfor about 4 years after being a LPN for about 9 or 10 years. I hopeyou win your case for this family, as having sarcoid doesn't mean thatwe are gonna waste away and crawl in a corner and die. Having sarcoidisn't a death sentence. Yes it could and most likely will end indeath for most of us, but people can live for years and years withsarcoidosis. Being on disability doesn't mean you have to give upeither. Your clients doctors say that she would have ended up ondisability, so what, I am on disability, and I volunteer at a localdomestic abuse shelter, and function just fine there. Not saying thatI don't have my bad days, but when those come around they work withme. Oh I would

rather be working as a LPN, cause the pay was muchbetter, but I can't so disabilty was the next best thing.I have trouble with organizing my thoughts into words, so I hope thisemail makes some sort of sense to you.Good Luck with this case, and please encourage the family to join usif they need support. from Iowa..>> > Hello, folks.> > I am a lawyer, currently involved in a medical malpractice case on > behalf of a patient who had neurosarcoidosis before a failure to > treat hydrocephalus led to her death.> > The hospital lawyers are suggesting, subtly, that the 28 year old > (who had only been diagnosed with the condition two months earlier) > was doomed to a very short life expectancy, or at least a life of > disability, and I am seeking empirical or anecdotal evidence to the > contrary. > > It seemed to me that a

group list like this might be the place to > start. > > My thanks, and those of my client's family, for any help or > suggestions.> > Geoff Waggoner>

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

Hi - yes your brother may contact me- also there

is a great Sarcoid sopport group in this area. Have

our brother send me an e-mail or he can call me at 206

300 7325. I live in the Belltown area of downtown

Seattle- Matt in Seattle

--- emersyn_mom@...> wrote:

> Matt,

>

> Hello, I was reading your post and noticed you

> live in Seattle Washington...that is where my

> brother Jim is living now...I really don't know if

> my brother has any support and was wondering if my

> brother could contact you?

>

> Blessings,

>

>

> Cohen belltown_mac@...> wrote:

> Dear Mr Waggoner- While your client may have

> become

> disabled it is untree that her life would not be

> forfilling- I have been diagnoised with Sarc for the

> past six years and while i am currently disabled i

> am

> far from living a life of disability- all of us on

> this line have NS and we all lead full filling

> lifes

> with-in the peramitors of the illness. We stay in

> touch with families, we visit each other and do many

> activities- I for one have been told i may have

> first

> gotten sarc in 1968 and they think it went into

> remission for several years and then came back

> again-

> I worked as a social worker for 19 years before

> needing to retireon disability. Also there are

> support

> groups all over the country for sarc patients to

> socialize and get up to date info on medical news,

> so

> i am proof that u can live with it a long time and

> that u can live a positive life regardless of the

> NS-

> if i can be of any help fell free to ask-Matt Cohen

> Seattle WA

>

> --- waggonerlaw waggonerlaw@...> wrote:

>

> >

> > Hello, folks.

> >

> > I am a lawyer, currently involved in a medical

> > malpractice case on

> > behalf of a patient who had neurosarcoidosis

> before

> > a failure to

> > treat hydrocephalus led to her death.

> >

> > The hospital lawyers are suggesting, subtly, that

> > the 28 year old

> > (who had only been diagnosed with the condition

> two

> > months earlier)

> > was doomed to a very short life expectancy, or at

> > least a life of

> > disability, and I am seeking empirical or

> anecdotal

> > evidence to the

> > contrary.

> >

> > It seemed to me that a group list like this might

> be

> > the place to

> > start.

> >

> > My thanks, and those of my client's family, for

> any

> > help or

> > suggestions.

> >

> > Geoff Waggoner

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi - yes your brother may contact me- also there

is a great Sarcoid sopport group in this area. Have

our brother send me an e-mail or he can call me at 206

300 7325. I live in the Belltown area of downtown

Seattle- Matt in Seattle

--- emersyn_mom@...> wrote:

> Matt,

>

> Hello, I was reading your post and noticed you

> live in Seattle Washington...that is where my

> brother Jim is living now...I really don't know if

> my brother has any support and was wondering if my

> brother could contact you?

>

> Blessings,

>

>

> Cohen belltown_mac@...> wrote:

> Dear Mr Waggoner- While your client may have

> become

> disabled it is untree that her life would not be

> forfilling- I have been diagnoised with Sarc for the

> past six years and while i am currently disabled i

> am

> far from living a life of disability- all of us on

> this line have NS and we all lead full filling

> lifes

> with-in the peramitors of the illness. We stay in

> touch with families, we visit each other and do many

> activities- I for one have been told i may have

> first

> gotten sarc in 1968 and they think it went into

> remission for several years and then came back

> again-

> I worked as a social worker for 19 years before

> needing to retireon disability. Also there are

> support

> groups all over the country for sarc patients to

> socialize and get up to date info on medical news,

> so

> i am proof that u can live with it a long time and

> that u can live a positive life regardless of the

> NS-

> if i can be of any help fell free to ask-Matt Cohen

> Seattle WA

>

> --- waggonerlaw waggonerlaw@...> wrote:

>

> >

> > Hello, folks.

> >

> > I am a lawyer, currently involved in a medical

> > malpractice case on

> > behalf of a patient who had neurosarcoidosis

> before

> > a failure to

> > treat hydrocephalus led to her death.

> >

> > The hospital lawyers are suggesting, subtly, that

> > the 28 year old

> > (who had only been diagnosed with the condition

> two

> > months earlier)

> > was doomed to a very short life expectancy, or at

> > least a life of

> > disability, and I am seeking empirical or

> anecdotal

> > evidence to the

> > contrary.

> >

> > It seemed to me that a group list like this might

> be

> > the place to

> > start.

> >

> > My thanks, and those of my client's family, for

> any

> > help or

> > suggestions.

> >

> > Geoff Waggoner

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi - yes your brother may contact me- also there

is a great Sarcoid sopport group in this area. Have

our brother send me an e-mail or he can call me at 206

300 7325. I live in the Belltown area of downtown

Seattle- Matt in Seattle

--- emersyn_mom@...> wrote:

> Matt,

>

> Hello, I was reading your post and noticed you

> live in Seattle Washington...that is where my

> brother Jim is living now...I really don't know if

> my brother has any support and was wondering if my

> brother could contact you?

>

> Blessings,

>

>

> Cohen belltown_mac@...> wrote:

> Dear Mr Waggoner- While your client may have

> become

> disabled it is untree that her life would not be

> forfilling- I have been diagnoised with Sarc for the

> past six years and while i am currently disabled i

> am

> far from living a life of disability- all of us on

> this line have NS and we all lead full filling

> lifes

> with-in the peramitors of the illness. We stay in

> touch with families, we visit each other and do many

> activities- I for one have been told i may have

> first

> gotten sarc in 1968 and they think it went into

> remission for several years and then came back

> again-

> I worked as a social worker for 19 years before

> needing to retireon disability. Also there are

> support

> groups all over the country for sarc patients to

> socialize and get up to date info on medical news,

> so

> i am proof that u can live with it a long time and

> that u can live a positive life regardless of the

> NS-

> if i can be of any help fell free to ask-Matt Cohen

> Seattle WA

>

> --- waggonerlaw waggonerlaw@...> wrote:

>

> >

> > Hello, folks.

> >

> > I am a lawyer, currently involved in a medical

> > malpractice case on

> > behalf of a patient who had neurosarcoidosis

> before

> > a failure to

> > treat hydrocephalus led to her death.

> >

> > The hospital lawyers are suggesting, subtly, that

> > the 28 year old

> > (who had only been diagnosed with the condition

> two

> > months earlier)

> > was doomed to a very short life expectancy, or at

> > least a life of

> > disability, and I am seeking empirical or

> anecdotal

> > evidence to the

> > contrary.

> >

> > It seemed to me that a group list like this might

> be

> > the place to

> > start.

> >

> > My thanks, and those of my client's family, for

> any

> > help or

> > suggestions.

> >

> > Geoff Waggoner

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi - yes your brother may contact me- also there

is a great Sarcoid sopport group in this area. Have

our brother send me an e-mail or he can call me at 206

300 7325. I live in the Belltown area of downtown

Seattle- Matt in Seattle

--- emersyn_mom@...> wrote:

> Matt,

>

> Hello, I was reading your post and noticed you

> live in Seattle Washington...that is where my

> brother Jim is living now...I really don't know if

> my brother has any support and was wondering if my

> brother could contact you?

>

> Blessings,

>

>

> Cohen belltown_mac@...> wrote:

> Dear Mr Waggoner- While your client may have

> become

> disabled it is untree that her life would not be

> forfilling- I have been diagnoised with Sarc for the

> past six years and while i am currently disabled i

> am

> far from living a life of disability- all of us on

> this line have NS and we all lead full filling

> lifes

> with-in the peramitors of the illness. We stay in

> touch with families, we visit each other and do many

> activities- I for one have been told i may have

> first

> gotten sarc in 1968 and they think it went into

> remission for several years and then came back

> again-

> I worked as a social worker for 19 years before

> needing to retireon disability. Also there are

> support

> groups all over the country for sarc patients to

> socialize and get up to date info on medical news,

> so

> i am proof that u can live with it a long time and

> that u can live a positive life regardless of the

> NS-

> if i can be of any help fell free to ask-Matt Cohen

> Seattle WA

>

> --- waggonerlaw waggonerlaw@...> wrote:

>

> >

> > Hello, folks.

> >

> > I am a lawyer, currently involved in a medical

> > malpractice case on

> > behalf of a patient who had neurosarcoidosis

> before

> > a failure to

> > treat hydrocephalus led to her death.

> >

> > The hospital lawyers are suggesting, subtly, that

> > the 28 year old

> > (who had only been diagnosed with the condition

> two

> > months earlier)

> > was doomed to a very short life expectancy, or at

> > least a life of

> > disability, and I am seeking empirical or

> anecdotal

> > evidence to the

> > contrary.

> >

> > It seemed to me that a group list like this might

> be

> > the place to

> > start.

> >

> > My thanks, and those of my client's family, for

> any

> > help or

> > suggestions.

> >

> > Geoff Waggoner

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Mr. Waggoner, I'm impressed with your willingness to search for information to help your client. If only all of our doctors would go to the trouble, we could save our energy for fighting this disease, rather that educating our health care providers.

Regarding the hydracephalus, we've had several members on this list with hydracephalus. One, who lives in Sweden, I think, had a baby last year. So although it's a serious complication, in most cases it can be managed. As to other symptoms caused by sarcoidosis, the prognosis varies widely, depending on the individual's response to treatment, whether the treatment itself is up-to-date, the patient's socioeconomic status & access to knowledgeable specialists.

I hope we have given you some useful information. Please let us know if there is more help we can provide. In the Links section, found at the bottom of this message & every other message sent through the group, you will find many excellent resources.

Ramblin' Rose Moderator

--- waggonerlaw wrote:> > Hello, folks.> > I am a lawyer, currently involved in a medical> malpractice case on > behalf of a patient who had neurosarcoidosis before> a failure to > treat hydrocephalus led to her death.> > The hospital lawyers are suggesting, subtly, that> the 28 year old > (who had only been diagnosed with the condition two> months earlier) > was doomed to a very short life expectancy, or at> least a life of > disability, and I am seeking empirical or anecdotal> evidence to the > contrary. > > It seemed to me that a group list like this might be> the place to > start. > > My thanks, and those of my client's family, for any> help or > suggestions.> > Geoff Waggoner> > > > > > > > > __________________________________________________