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]

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]

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 wrote: Dear Mr Waggoner- While your client may have becomedisabled it is untree that her life would not beforfilling- I have been diagnoised with Sarc for thepast six years and while i am currently disabled i amfar from living a life of disability- all of us onthis line have NS and we all lead full filling lifeswith-in the peramitors of the illness. We stay intouch with families, we visit each other and do manyactivities- I for one have been told

i may have firstgotten sarc in 1968 and they think it went intoremission for several years and then came back again-I worked as a social worker for 19 years beforeneeding to retireon disability. Also there are supportgroups all over the country for sarc patients tosocialize and get up to date info on medical news, soi am proof that u can live with it a long time andthat 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 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]

Geoff Waggoner

Hi my name is , and I live in Iowa. I have been on disability

for about 4 years after being a LPN for about 9 or 10 years. I hope

you win your case for this family, as having sarcoid doesn't mean that

we are gonna waste away and crawl in a corner and die. Having sarcoid

isn't a death sentence. Yes it could and most likely will end in

death for most of us, but people can live for years and years with

sarcoidosis. Being on disability doesn't mean you have to give up

either. Your clients doctors say that she would have ended up on

disability, so what, I am on disability, and I volunteer at a local

domestic abuse shelter, and function just fine there. Not saying that

I don't have my bad days, but when those come around they work with

me. Oh I would rather be working as a LPN, cause the pay was much

better, but I can't so disabilty was the next best thing.

I have trouble with organizing my thoughts into words, so I hope this

email makes some sort of sense to you.

Good Luck with this case, and please encourage the family to join us

if 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

>

[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 Matt, I sent this info to my brother..I want to thank you so much!!!! I feel bad I'm getting some posts from others on this board..and haven't had time to respond..I'm going through issues also on my end and get very few min...to respond...so for those who've left posts..I've read them all and I appreciate each and everyone one...I will try and respond as much as I can. Hugs, Cohen wrote: Hi - yes your brother may contact me- also thereis a great Sarcoid sopport group in this area. Haveour brother send me an e-mail or he can call me at 206300 7325. I live in the Belltown area of downtownSeattle- Matt in Seattle--- 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 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 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> > > > > > > > > __________________________________________________

[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> > > > > > > > > __________________________________________________