RE: a good one

October 1, 2007

Marla, this is where you (or hubby) need to be assertive and say, "What does neuropsych testing have to do with weakness in my body & limbs?" And keep asking questions until you get an answer that makes sense. If you won't be going back to the neuro soon, either call for an appointment or write a letter, expressing your dissatisfaction & concerns, mark the envelope "Personal," and tell him that you expect a phone call within a week.

If he keeps striking out, trade him! Find a free agent who will listen to you & explain why he/she is recommending a particular option. If this guy is usually better than this, say so in your letter, and that you are disappointed. You might need neuro-psych testing for some reason, but you need to have this issue of weakness addressed, and soon.

Do you want me to write him a letter?!? I'm in the mood.

Rose>> > > OK, guys I have to share this, my symptoms of weakness in my left side are> getting worse, and now my right leg too, and having a very difficult time> getting the insurance company to OK anything, but the Methotrexate and> plaquanil are no longer holding it back. So anyway the neuro wants me to do> some neuro-psych tests, so first I have to go in and see a PHD guy who asks> all those stupid questions, will I got "Doggie Houser') spelling wrong but> for those of you that don't know what I'm talking about, this guy looks 12,> and I'm thinking right this is going to be fun! I start with have you ever> seen NS, he says yeah, a couple times he thinks, then starts to ask> questions, and of course keeps coming back to depression, which I am not, as> we continue to talk its obvious he doesn't even know what NS is, and I> finally say, you have not ever seen NS before have you? He say well I guess> not! So this week I get to go back and do some of those ridiculous tests, I> am dreading, and then I get a call from there speech therapy saying my> insurance has OK'd my speech therapy, OK tell the truth, is speech therapy> going to help stop the NS from attacking and making weak my body, I don't> get it?? I can still talk, so it doesn't always make sense, but it comes> out? I really don't get it?? Love to all, Marla>

October 1, 2007

Marla, this is where you (or hubby) need to be assertive and say, "What does neuropsych testing have to do with weakness in my body & limbs?" And keep asking questions until you get an answer that makes sense. If you won't be going back to the neuro soon, either call for an appointment or write a letter, expressing your dissatisfaction & concerns, mark the envelope "Personal," and tell him that you expect a phone call within a week.

If he keeps striking out, trade him! Find a free agent who will listen to you & explain why he/she is recommending a particular option. If this guy is usually better than this, say so in your letter, and that you are disappointed. You might need neuro-psych testing for some reason, but you need to have this issue of weakness addressed, and soon.

Do you want me to write him a letter?!? I'm in the mood.

Rose>> > > OK, guys I have to share this, my symptoms of weakness in my left side are> getting worse, and now my right leg too, and having a very difficult time> getting the insurance company to OK anything, but the Methotrexate and> plaquanil are no longer holding it back. So anyway the neuro wants me to do> some neuro-psych tests, so first I have to go in and see a PHD guy who asks> all those stupid questions, will I got "Doggie Houser') spelling wrong but> for those of you that don't know what I'm talking about, this guy looks 12,> and I'm thinking right this is going to be fun! I start with have you ever> seen NS, he says yeah, a couple times he thinks, then starts to ask> questions, and of course keeps coming back to depression, which I am not, as> we continue to talk its obvious he doesn't even know what NS is, and I> finally say, you have not ever seen NS before have you? He say well I guess> not! So this week I get to go back and do some of those ridiculous tests, I> am dreading, and then I get a call from there speech therapy saying my> insurance has OK'd my speech therapy, OK tell the truth, is speech therapy> going to help stop the NS from attacking and making weak my body, I don't> get it?? I can still talk, so it doesn't always make sense, but it comes> out? I really don't get it?? Love to all, Marla>

October 1, 2007

Rose

thank you, and I know just what you mean, in fact my husband kept saying watch

these people, as he deals with people who sue over there “Brain Injury”

when they got hi at 5 miles an hour, and of course they put them through all

kinds of rehabilitation? I talked to the nurse at my pulmonologist and asked

if the doctor was getting any where on a new medication and I guess he is

working on it with of course who else but the high and mighty insurance company

L I might

need you to write a letter to them! Love ya Rose, Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Monday, October 01, 2007

2:47 PM

To: Neurosarcoidosis

Subject: Re: a

good one

Marla,

this is where you (or hubby) need to be assertive and say, " What does

neuropsych testing have to do with weakness in my body & limbs? "

And keep asking questions until you get an answer that makes sense. If

you won't be going back to the neuro soon, either call for an appointment or

write a letter, expressing your dissatisfaction & concerns, mark the

envelope " Personal, " and tell him that you expect a phone call within

a week.

If he

keeps striking out, trade him! Find a free agent who will listen to you

& explain why he/she is recommending a particular option. If this guy

is usually better than this, say so in your letter, and that you are

disappointed. You might need neuro-psych testing for some reason, but you

need to have this issue of weakness addressed, and soon.

Do you

want me to write him a letter?!? I'm in the mood.

Rose

>

> OK, guys I have to share this, my symptoms of weakness in my left side are

> getting worse, and now my right leg too, and having a very difficult time

> getting the insurance company to OK anything, but the Methotrexate and

> plaquanil are no longer holding it back. So anyway the neuro wants me to

do

> some neuro-psych tests, so first I have to go in and see a PHD guy who

asks

> all those stupid questions, will I got " Doggie Houser') spelling

wrong but

> for those of you that don't know what I'm talking about, this guy looks

12,

> and I'm thinking right this is going to be fun! I start with have you ever

> seen NS, he says yeah, a couple times he thinks, then starts to ask

> questions, and of course keeps coming back to depression, which I am not,

as

> we continue to talk its obvious he doesn't even know what NS is, and I

> finally say, you have not ever seen NS before have you? He say well I

guess

> not! So this week I get to go back and do some of those ridiculous tests,

I

> am dreading, and then I get a call from there speech therapy saying my

> insurance has OK'd my speech therapy, OK tell the truth, is speech therapy

> going to help stop the NS from attacking and making weak my body, I don't

> get it?? I can still talk, so it doesn't always make sense, but it comes

> out? I really don't get it?? Love to all, Marla

>

October 4, 2007

Hi Marla, I am sorry your symptoms are getting worse and you aren't getting much help from your neuro right now. I have also been to these straight out of school dr.'s too. Boston has a lot of teaching schools for Hospitals. They have no clue about neurosarcoid , I agree. As most of have been thru, I went to those "lovely psych" tests too, and they aren't very helpful. Of course, as you said, (as well as other drs. I have seen), they say its depression or anxiety and don't bother to go any deeper and send you home. As for the speech therapy conclusion, that is really odd, I agree! Maybe the psych. had to give some sort of result in your case and leaned toward that, not knowing what else to do. (Sorry guys, but I have been thru a ton of drs 12-15 in diff specialties) locally and in Boston where they're supposed to have some of the best in the country and haven't been too successful,

leaving me very frustrated.) If it were me, I would go back to the neuro and give him my impression on the results and try and get him to explain what's going on. What a runaround, good luck, Hugs, Debbie T. Co-ModeratorMarla Bramer wrote: OK, guys I have to share this, my symptoms of weakness in my left side are getting worse, and now my right leg too, and having a very difficult time getting the insurance company to OK anything, but

the Methotrexate and plaquanil are no longer holding it back. So anyway the neuro wants me to do some neuro-psych tests, so first I have to go in and see a PHD guy who asks all those stupid questions, will I got “Doggie Houser’) spelling wrong but for those of you that don’t know what I’m talking about, this guy looks 12, and I’m thinking right this is going to be fun! I start with have you ever seen NS, he says yeah, a couple times he thinks, then starts to ask questions, and of course keeps coming back to depression, which I am not, as we continue to talk its obvious he doesn’t even know what NS is, and I finally say, you have not ever seen NS before have you? He say well I guess not! So this week I get to go back and do some of those ridiculous tests, I am dreading, and then I get a call from there speech therapy saying my insurance has OK’d my speech therapy, OK tell the truth, is speech therapy going to help stop the NS from

attacking and making weak my body, I don’t get it?? I can still talk, so it doesn’t always make sense, but it comes out? I really don’t get it?? Love to all, Marla

Shape Yahoo! in your own image. Join our Network Research Panel today!

October 8, 2007

Thanks Debbie,

Actually

my Neuro is not bad, it the Neuro PHD guy that did an intake on me before deciding

what tests to run, so I’ve done 4 hours of the brain tests, and the were

better this time then I thought, they were very non personal last time, but

this time this guy was with me the whole time, it was much more personal, and

we joked and talked so the time went by faster, and at the end he did agree

that I have a problem with getting the words out, but the words are some where

in there, I guess a speech person can tell if she can help me re route my brain

and use other parts for the memory thing? Well see I have the speech eval

tomorrow at 5pm, was suppose to today, but bad day, way to yucky to leave this

am, went back to bed and then slept until 230pm, I hope I am not headed back

down that road, but sort seems like it. Well let you know what the speech

person says tomorrow, thanks, Marl a

Marla Bramer

Independent Beauty

Consultant

Kay cosmetics

mbramer@...

www.marykay.com

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Thursday, October 04, 2007

3:23 AM

To: Neurosarcoidosis

Subject: Re: a

good one

Hi Marla, I am sorry your symptoms are getting worse

and you aren't getting much help from your neuro right now. I have also

been to these straight out of school dr.'s too. Boston has a lot of teaching schools for

Hospitals. They have no clue about neurosarcoid , I agree. As most

of have been thru, I went to those " lovely psych " tests too, and they

aren't very helpful. Of course, as you said, (as well as other drs. I

have seen), they say its depression or anxiety and don't bother to go any

deeper and send you home. As for the speech therapy conclusion, that is really

odd, I agree! Maybe the psych. had to give some sort of result

in your case and leaned toward that, not knowing what else to do. (Sorry guys,

but I have been thru a ton of drs 12-15 in diff specialties) locally

and in Boston

where they're supposed to have some of the best in the country and haven't been

too successful, leaving me very frustrated.) If it were me, I would go

back to the neuro and give him my impression on the results and try and

get him to explain what's going on. What a runaround, good luck,

Hugs, Debbie T. Co-Moderator

Marla Bramer

<mebramer (AT) gmail (DOT) com> wrote:

OK, guys

I have to share this, my symptoms of weakness in my left side are getting

worse, and now my right leg too, and having a very difficult time getting the

insurance company to OK anything, but the Methotrexate and plaquanil are no

longer holding it back. So anyway the neuro wants me to do some

neuro-psych tests, so first I have to go in and see a PHD guy who asks

all those stupid questions, will I got “Doggie Houser’) spelling

wrong but for those of you that don’t know what I’m talking about,

this guy looks 12, and I’m thinking right this is going to be fun!

I start with have you ever seen NS, he says yeah, a couple times he thinks,

then starts to ask questions, and of course keeps coming back to depression,

which I am not, as we continue to talk its obvious he doesn’t even know

what NS is, and I finally say, you have not ever seen NS before have you?

He say well I guess not! So this week I get to go back and do some of

those ridiculous tests, I am dreading, and then I get a call from there speech

therapy saying my insurance has OK’d my speech therapy, OK

tell the truth, is speech therapy going to help stop the NS from attacking and

making weak my body, I don’t get it?? I can still talk, so it

doesn’t always make sense, but it comes out? I really don’t

get it?? Love to all, Marla

Shape Yahoo! in your own image. Join

our Network Research Panel today!

October 9, 2007

Marla, when I first met , she had problems getting the write words out orally, but did fine when typing. A different route in the brain, apparently. I don't know if that's still the case with her, but it just shows how complex our nervous system is; still the best computer in existence!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: mebramer@...Date: Mon, 8 Oct 2007 22:54:40 -0700Subject: RE: a good one

Thanks Debbie,

Actually my Neuro is not bad, it the Neuro PHD guy that did an intake on me before deciding what tests to run, so I’ve done 4 hours of the brain tests, and the were better this time then I thought, they were very non personal last time, but this time this guy was with me the whole time, it was much more personal, and we joked and talked so the time went by faster, and at the end he did agree that I have a problem with getting the words out, but the words are some where in there, I guess a speech person can tell if she can help me re route my brain and use other parts for the memory thing? Well see I have the speech eval tomorrow at 5pm, was suppose to today, but bad day, way to yucky to leave this am, went back to bed and then slept until 230pm, I hope I am not headed back down that road, but sort seems like it. Well let you know what the speech person says tomorrow, thanks, Marl a

Marla Bramer

Independent Beauty Consultant

Kay cosmetics

mbramer (AT) marykay (DOT) com

www.marykay.com

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Thursday, October 04, 2007 3:23 AMTo: Neurosarcoidosis Subject: Re: a good one

Hi Marla, I am sorry your symptoms are getting worse and you aren't getting much help from your neuro right now. I have also been to these straight out of school dr.'s too. Boston has a lot of teaching schools for Hospitals. They have no clue about neurosarcoid , I agree. As most of have been thru, I went to those "lovely psych" tests too, and they aren't very helpful. Of course, as you said, (as well as other drs. I have seen), they say its depression or anxiety and don't bother to go any deeper and send you home. As for the speech therapy conclusion, that is really odd, I agree! Maybe the psych. had to give some sort of result in your case and leaned toward that, not knowing what else to do. (Sorry guys, but I have been thru a ton of drs 12-15 in diff specialties) locally and in Boston where they're supposed to have some of the best in the country and haven't been too successful, leaving me very frustrated.) If it were me, I would go back to the neuro and give him my impression on the results and try and get him to explain what's going on. What a runaround, good luck,

Hugs, Debbie T. Co-ModeratorMarla Bramer <mebramer (AT) gmail (DOT) com> wrote:

OK, guys I have to share this, my symptoms of weakness in my left side are getting worse, and now my right leg too, and having a very difficult time getting the insurance company to OK anything, but the Methotrexate and plaquanil are no longer holding it back. So anyway the neuro wants me to do some neuro-psych tests, so first I have to go in and see a PHD guy who asks all those stupid questions, will I got “Doggie Houser’) spelling wrong but for those of you that don’t know what I’m talking about, this guy looks 12, and I’m thinking right this is going to be fun! I start with have you ever seen NS, he says yeah, a couple times he thinks, then starts to ask questions, and of course keeps coming back to depression, which I am not, as we continue to talk its obvious he doesn’t even know what NS is, and I finally say, you have not ever seen NS before have you? He say well I guess not! So this week I get to go back and do some of those ridiculous tests, I am dreading, and then I get a call from there speech therapy saying my insurance has OK’d my speech therapy, OK tell the truth, is speech therapy going to help stop the NS from attacking and making weak my body, I don’t get it?? I can still talk, so it doesn’t always make sense, but it comes out? I really don’t get it?? Love to all, Marla

Shape Yahoo! in your own image. Join our Network Research Panel today!

Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! Try now!

October 9, 2007

Marla, when I first met , she had problems getting the write words out orally, but did fine when typing. A different route in the brain, apparently. I don't know if that's still the case with her, but it just shows how complex our nervous system is; still the best computer in existence!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: mebramer@...Date: Mon, 8 Oct 2007 22:54:40 -0700Subject: RE: a good one

Thanks Debbie,

Actually my Neuro is not bad, it the Neuro PHD guy that did an intake on me before deciding what tests to run, so I’ve done 4 hours of the brain tests, and the were better this time then I thought, they were very non personal last time, but this time this guy was with me the whole time, it was much more personal, and we joked and talked so the time went by faster, and at the end he did agree that I have a problem with getting the words out, but the words are some where in there, I guess a speech person can tell if she can help me re route my brain and use other parts for the memory thing? Well see I have the speech eval tomorrow at 5pm, was suppose to today, but bad day, way to yucky to leave this am, went back to bed and then slept until 230pm, I hope I am not headed back down that road, but sort seems like it. Well let you know what the speech person says tomorrow, thanks, Marl a

Marla Bramer

Independent Beauty Consultant

Kay cosmetics

mbramer (AT) marykay (DOT) com

www.marykay.com

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Thursday, October 04, 2007 3:23 AMTo: Neurosarcoidosis Subject: Re: a good one

Hi Marla, I am sorry your symptoms are getting worse and you aren't getting much help from your neuro right now. I have also been to these straight out of school dr.'s too. Boston has a lot of teaching schools for Hospitals. They have no clue about neurosarcoid , I agree. As most of have been thru, I went to those "lovely psych" tests too, and they aren't very helpful. Of course, as you said, (as well as other drs. I have seen), they say its depression or anxiety and don't bother to go any deeper and send you home. As for the speech therapy conclusion, that is really odd, I agree! Maybe the psych. had to give some sort of result in your case and leaned toward that, not knowing what else to do. (Sorry guys, but I have been thru a ton of drs 12-15 in diff specialties) locally and in Boston where they're supposed to have some of the best in the country and haven't been too successful, leaving me very frustrated.) If it were me, I would go back to the neuro and give him my impression on the results and try and get him to explain what's going on. What a runaround, good luck,

Hugs, Debbie T. Co-ModeratorMarla Bramer <mebramer (AT) gmail (DOT) com> wrote:

OK, guys I have to share this, my symptoms of weakness in my left side are getting worse, and now my right leg too, and having a very difficult time getting the insurance company to OK anything, but the Methotrexate and plaquanil are no longer holding it back. So anyway the neuro wants me to do some neuro-psych tests, so first I have to go in and see a PHD guy who asks all those stupid questions, will I got “Doggie Houser’) spelling wrong but for those of you that don’t know what I’m talking about, this guy looks 12, and I’m thinking right this is going to be fun! I start with have you ever seen NS, he says yeah, a couple times he thinks, then starts to ask questions, and of course keeps coming back to depression, which I am not, as we continue to talk its obvious he doesn’t even know what NS is, and I finally say, you have not ever seen NS before have you? He say well I guess not! So this week I get to go back and do some of those ridiculous tests, I am dreading, and then I get a call from there speech therapy saying my insurance has OK’d my speech therapy, OK tell the truth, is speech therapy going to help stop the NS from attacking and making weak my body, I don’t get it?? I can still talk, so it doesn’t always make sense, but it comes out? I really don’t get it?? Love to all, Marla

Shape Yahoo! in your own image. Join our Network Research Panel today!

Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! Try now!

October 9, 2007

Rose,

I have

problems with the computer too, sometimes what I put on the computer is not

what I wanted to say, I have learned to read my words before sending, I make a

gazillion mistakes, thank goodness for spell check, and it takes me longer then

it use to, oh well life is good. Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Tuesday, October 09, 2007

6:53 AM

To:

neurosarcoidosis

Subject: RE: a

good one

Marla, when I first met , she had problems

getting the write words out orally, but did fine when typing. A different

route in the brain, apparently. I don't know if that's still the case

with her, but it just shows how complex our nervous system is; still the best

computer in existence!

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

" How

far you go in life depends on your being tender with the young, compassionate

with the aged, sympathetic with the striving, and tolerant of the weak and the

strong. Because someday in life you will have been all of these. "

~

Washington Carver

To: Neurosarcoidosis

From: mebramer (AT) gmail (DOT) com

Date: Mon, 8 Oct 2007 22:54:40 -0700

Subject: RE: a good one

Thanks

Debbie,

Actually

my Neuro is not bad, it the Neuro PHD guy that did an intake on me before deciding

what tests to run, so I’ve done 4 hours of the brain tests, and the were better

this time then I thought, they were very non personal last time, but this time

this guy was with me the whole time, it was much more personal, and we joked

and talked so the time went by faster, and at the end he did agree that I have

a problem with getting the words out, but the words are some where in there, I

guess a speech person can tell if she can help me re route my brain and use

other parts for the memory thing? Well see I have the speech eval

tomorrow at 5pm, was suppose to today, but bad day, way to yucky to leave this

am, went back to bed and then slept until 230pm, I hope I am not headed back

down that road, but sort seems like it. Well let you know what the speech

person says tomorrow, thanks, Marl a

Marla Bramer

Independent Beauty

Consultant

Kay cosmetics

mbramer (AT) marykay (DOT) com

www.marykay.com

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Thursday, October 04, 2007

3:23 AM

To: Neurosarcoidosis

Subject: Re: a

good one

Hi Marla, I am sorry your symptoms

are getting worse and you aren't getting much help from your neuro right

now. I have also been to these straight out of school dr.'s too. Boston has a lot of

teaching schools for Hospitals. They have no clue about neurosarcoid , I

agree. As most of have been thru, I went to those " lovely

psych " tests too, and they aren't very helpful. Of course, as you

said, (as well as other drs. I have seen), they say its depression or anxiety

and don't bother to go any deeper and send you home. As for the speech therapy

conclusion, that is really odd, I agree! Maybe the psych. had

to give some sort of result in your case and leaned toward that, not knowing

what else to do. (Sorry guys, but I have been thru a ton of drs 12-15 in diff

specialties) locally and in Boston

where they're supposed to have some of the best in the country and haven't been

too successful, leaving me very frustrated.) If it were me, I would go

back to the neuro and give him my impression on the results and try and

get him to explain what's going on. What a runaround, good luck,

Hugs, Debbie T. Co-Moderator

Marla Bramer

<mebramer (AT) gmail (DOT) com> wrote:

OK, guys

I have to share this, my symptoms of weakness in my left side are getting

worse, and now my right leg too, and having a very difficult time getting the

insurance company to OK anything, but the Methotrexate and plaquanil are no

longer holding it back. So anyway the neuro wants me to do some neuro-psych

tests, so first I have to go in and see a PHD guy who asks all those

stupid questions, will I got “Doggie Houser’) spelling wrong but for those of

you that don’t know what I’m talking about, this guy looks 12, and I’m thinking

right this is going to be fun! I start with have you ever seen NS, he

says yeah, a couple times he thinks, then starts to ask questions, and of

course keeps coming back to depression, which I am not, as we continue to talk

its obvious he doesn’t even know what NS is, and I finally say, you have not

ever seen NS before have you? He say well I guess not! So this week

I get to go back and do some of those ridiculous tests, I am dreading, and then

I get a call from there speech therapy saying my insurance has OK’d my

speech therapy, OK tell the truth, is speech therapy going to help stop

the NS from attacking and making weak my body, I don’t get it?? I can

still talk, so it doesn’t always make sense, but it comes out? I really

don’t get it?? Love to all, Marla

Shape Yahoo! in your own image. Join our Network Research Panel today!

Boo! Scare away worms, viruses and so much more! Try Windows Live

OneCare! Try now!

October 9, 2007