Re: Word recalling - Forgetting Names of Things

[Guest guest]

YEah Barb, I live in Tennessee.. just west of Nashville.. and I want Chocolate through and through.. lol See you then..

-- Re: Word recalling - Forgetting Names of Things

....My husband took me out for my 50th b-day today and some other members of my family were also invited. One of my good friends stopped by too. I panicked when I knew i had to introduce her and remember her name and all their names. But I did it! What a funny/sad thing to be happy about. People have no idea what we go through do they... I got excited and proud that I could remember my own family's names....lol. ...then again it's kinda sad. Maybe it was that strawberry daiguirie(sp?) I had. Yeah, Tracie, I took extra milk thistle when I got home....lol. Somebody gave me a journal today, too. They are finally getting me stuff that's ME. At least three people asked me how I felt about turning 50...one person said it's all down hill. I said...Hey, I woke up yesterday(my real b-day) and thought Hey, I made it! I made it to see 50! I had a big frickin smile on my face all day. The last decade has been pretty bad... so I was just glad I made it this far. My comments kinda shocked and surprised them but it's all the truth now ain't it..... Despite the fact that it was nearly 100 here I felt great. It's so nice to have a really great day....it kinda makes up for the zillion that sucked. hugs S.tiodaat@... wrote:

This is where the Neuropsych testing should come in. Our MD's fall on that "you're getting older" bs too, and shrug it off. But for us, it's a true dementia issue caused by our brains being hit with the sarc in the area of the Right Frontal Lobe--where all the "executive functions" happen. Recall, short-term memory, problem solving, personality, sexuality, temper, multi-tasking are all in this part of the brain.The different tasks that you do with Neuropsych tests require a different area of the brain to complete, so if you're getting signals that are shorting out -- you won't be able to do all the task requires. It can be the one set of tests that can confirm NS when there are no "granulomas or white spots" on the brain Ct's and such. If they work it with the EEG (brain wave study) and the EMG's (muscle studys) it can really show where signals aren't getting from the brain to your legs and feet, or hands, and it can verify that complaint that "Yes, this is why you can't hold that coffee cup, or why your fork does summersaults in your hand when you're eating spaghetti. (and wearing a white blouse.) The neuropsych testing along with the other two tests, can really help to pull the diagnosis out of the hat. It was what confirmed my NS and got my SSDI approved. Take care,TracieNS Co-owner/moderator

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__________________________________________________

[Guest guest]

Tom, I can not imagine trying to remember things in

two languages. Gracious, but that make it twice as

bad in more ways than one. Hope things improve, take

care///Connie

--- da 3thing da3thing@...> wrote:

---------------------------------

hi guys i know i never contribute this is the first

time but i read everyones posts this is the first time

that i have heard anything about this problem and i

completely identify with it it's bad enough trying to

remember anything at all going to the supermarket or

just talking to a old co worker that i've known for

years but i just can't seem to remember his name so i

just smile and pretend and generally feel stupid. this

is worse for me is that i live overseas and have to

speak dutch and i was pretty good at it got a diploma

and everything from the ministry of education that i

can speak dutch at a university level but its just

getting worse and worse and i cannot recall any words

anymore and carrying on a simple conversation is a lot

of work for me and people who don't know me that well

start jumping to conclusions that i am not motivated

to learn their language but i have an i do but it

seems all i ever do anymore is try to explain the

unexplainable and making excuses or just keeping to

myself nowadays which is the easy safe thing for me to

do. also been having a lot of problems with numbness

in my left arm from my elbow to my pinky on my left

hand sometimes its just feels funny and sometimes i

don't feel a thing been to the doc and they just

shrug. just pretty depressing and not sure what to do

anymore

tom

---------------------------------

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: Re: Word recalling -

Forgetting Names of Things

Date: Sun, 16 Jul 2006 04:41:52 -0700 (PDT)

Diane,

The memory recall for names was my first problem. I

was young, don't remember the age but I could not

remember people's names (those I personally knew) or

names of authors of books, etc. Then I had a problem

of recalling more than two names at a time. For

example, My sister-in-law came to visit me from out of

state. She is a nurse and she met me at the hospital.

I started to introduce her to two of my best friends

that I had worked with all day. I introduced the first

one but could not remember the name of the second. I

would meet a doctor on the elevator that I had known

for years and when I would start to say hello I would

not be able to remember his name. I could not remember

the names for medications. In my brain I knew it, it

was as if the word was right on the tip of my tongue

but I couldn't get it. The thought I probably had a

slight stroke in " Brokaw's Center " . This started in my

early thirties.

My mother had Transverse Mylitis from radiation

therapy she received for lung cancer but it usually is

cause by the immune system going a little haywire. It

can happen to Sarcoid patients.

I fail the test for cognition any more. I can't

remember ethree things for five minutes and now I

can't spell. This came on rather quickly, too. One day

I was ok and the next I started to sign in at a

meeting and could not spell my name.

Barb

Diane Aja dianeaja@...> wrote:

Marla and Connie,

I happen to see you are talking about forgetting the

word you're trying to say. I was just explaining that

to one of my best friends this afternoon as I sat at

her table and forgot at least five words out of a two

minute conversation! I was telling her how over the

past two months my word recall has become horrible.

This has been on the decline since I was diagnosed

originally with Transverse Myelitis (really Sarc) back

in 2000. It tapered off for a long time and since my

sarc has been full blown lately, my memory recall is

REALLY bad. I can look right at something and not be

able to tell you what it is! I'm only 44 years old

and I know it's because of the sarc, not old age.

Some of you may disagree, but I'd like to know how

many others are having the same problem without even

having brain involvement? I do have tremendous

hearing loss though which I just realized must be from

the sarc and nobody has ever agreed with me about that

either. All of a sudden I just started to go deaf for

no reason. Don't think so. And Marla, I too, feel

really stupid when I can't spit out a word when I'm

having a conversation with people I don't know very

well, but I just start laughing and let them know that

this lovely thing I have must be stealing my brain

cells from me and I wish it would give them back!

Would someone please turn on the rain down here in

Texas? ha-ha

Diane Aja

Re: Re: Just back online..

missed everyone

Date: Tue, 11 Jul 2006 20:11:03 -0700 (PDT)

Terri,

Here comes the DUH moment. I do not recognize the

initials....what is MRSA.

Thanks, Connie

mosaicgirl1 mosaicgirl1@...> wrote:

,

Sorry to hear you are sick. MRSA is a pretty bad

infection so just take

care of yourself. Don't overdo it.

Terri G.

>

> I just wanted to leave you all know i have been down

with MARSA, i had

such

> infection in my mouth, throat, and on my breasts and

abdomen. i have

these

> huge open sores all over my stomach.

> I am on Cefeclor, & doxocyclene..(spelling) had

fever of 101.7 for

most

> time. since friday.finally today i feel sorta human,

im waiting to

hear back from

> the IDS from the main hospital my family dr is

conntacting them and

the

> neuro.about stopping the imuran untill i get over

this infection.. i

have been

> holding out on going in the hospital... oh i hate

that place !!! i

told them if

> i get to the point i need IV meds to bring them to

the house.. i don't

want

> to go near a hospital and get somthing else.

>

> i think of you all daily .. hugs and blessings

>

> in pa

>

---------------------------------

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__________________________________________________

[Guest guest]

Tom, I can not imagine trying to remember things in

two languages. Gracious, but that make it twice as

bad in more ways than one. Hope things improve, take

care///Connie

--- da 3thing da3thing@...> wrote:

---------------------------------

hi guys i know i never contribute this is the first

time but i read everyones posts this is the first time

that i have heard anything about this problem and i

completely identify with it it's bad enough trying to

remember anything at all going to the supermarket or

just talking to a old co worker that i've known for

years but i just can't seem to remember his name so i

just smile and pretend and generally feel stupid. this

is worse for me is that i live overseas and have to

speak dutch and i was pretty good at it got a diploma

and everything from the ministry of education that i

can speak dutch at a university level but its just

getting worse and worse and i cannot recall any words

anymore and carrying on a simple conversation is a lot

of work for me and people who don't know me that well

start jumping to conclusions that i am not motivated

to learn their language but i have an i do but it

seems all i ever do anymore is try to explain the

unexplainable and making excuses or just keeping to

myself nowadays which is the easy safe thing for me to

do. also been having a lot of problems with numbness

in my left arm from my elbow to my pinky on my left

hand sometimes its just feels funny and sometimes i

don't feel a thing been to the doc and they just

shrug. just pretty depressing and not sure what to do

anymore

tom

---------------------------------

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: Re: Word recalling -

Forgetting Names of Things

Date: Sun, 16 Jul 2006 04:41:52 -0700 (PDT)

Diane,

The memory recall for names was my first problem. I

was young, don't remember the age but I could not

remember people's names (those I personally knew) or

names of authors of books, etc. Then I had a problem

of recalling more than two names at a time. For

example, My sister-in-law came to visit me from out of

state. She is a nurse and she met me at the hospital.

I started to introduce her to two of my best friends

that I had worked with all day. I introduced the first

one but could not remember the name of the second. I

would meet a doctor on the elevator that I had known

for years and when I would start to say hello I would

not be able to remember his name. I could not remember

the names for medications. In my brain I knew it, it

was as if the word was right on the tip of my tongue

but I couldn't get it. The thought I probably had a

slight stroke in " Brokaw's Center " . This started in my

early thirties.

My mother had Transverse Mylitis from radiation

therapy she received for lung cancer but it usually is

cause by the immune system going a little haywire. It

can happen to Sarcoid patients.

I fail the test for cognition any more. I can't

remember ethree things for five minutes and now I

can't spell. This came on rather quickly, too. One day

I was ok and the next I started to sign in at a

meeting and could not spell my name.

Barb

Diane Aja dianeaja@...> wrote:

Marla and Connie,

I happen to see you are talking about forgetting the

word you're trying to say. I was just explaining that

to one of my best friends this afternoon as I sat at

her table and forgot at least five words out of a two

minute conversation! I was telling her how over the

past two months my word recall has become horrible.

This has been on the decline since I was diagnosed

originally with Transverse Myelitis (really Sarc) back

in 2000. It tapered off for a long time and since my

sarc has been full blown lately, my memory recall is

REALLY bad. I can look right at something and not be

able to tell you what it is! I'm only 44 years old

and I know it's because of the sarc, not old age.

Some of you may disagree, but I'd like to know how

many others are having the same problem without even

having brain involvement? I do have tremendous

hearing loss though which I just realized must be from

the sarc and nobody has ever agreed with me about that

either. All of a sudden I just started to go deaf for

no reason. Don't think so. And Marla, I too, feel

really stupid when I can't spit out a word when I'm

having a conversation with people I don't know very

well, but I just start laughing and let them know that

this lovely thing I have must be stealing my brain

cells from me and I wish it would give them back!

Would someone please turn on the rain down here in

Texas? ha-ha

Diane Aja

Re: Re: Just back online..

missed everyone

Date: Tue, 11 Jul 2006 20:11:03 -0700 (PDT)

Terri,

Here comes the DUH moment. I do not recognize the

initials....what is MRSA.

Thanks, Connie

mosaicgirl1 mosaicgirl1@...> wrote:

,

Sorry to hear you are sick. MRSA is a pretty bad

infection so just take

care of yourself. Don't overdo it.

Terri G.

>

> I just wanted to leave you all know i have been down

with MARSA, i had

such

> infection in my mouth, throat, and on my breasts and

abdomen. i have

these

> huge open sores all over my stomach.

> I am on Cefeclor, & doxocyclene..(spelling) had

fever of 101.7 for

most

> time. since friday.finally today i feel sorta human,

im waiting to

hear back from

> the IDS from the main hospital my family dr is

conntacting them and

the

> neuro.about stopping the imuran untill i get over

this infection.. i

have been

> holding out on going in the hospital... oh i hate

that place !!! i

told them if

> i get to the point i need IV meds to bring them to

the house.. i don't

want

> to go near a hospital and get somthing else.

>

> i think of you all daily .. hugs and blessings

>

> in pa

>

---------------------------------

Do you Yahoo!?

Everyone is raving about the all-new Yahoo! Mail Beta.

---------------------------------

Check the weather anywhere, anytime - just type

" weather " from MSN Search

---------------------------------

Do you Yahoo!?

Next-gen email? Have it all with the all-new Yahoo!

Mail Beta.

---------------------------------

Yahoo! Music Unlimited - Access over 1 million songs.

Try it free.

__________________________________________________

[Guest guest]

Trust me Diane, it can be quite a game at times. Lots

of notes, apologies to clients for the fouled up

sentences that don't make sense, and working for an

organization that it's whole goal is to keep disabled

people working. Otherwise, heaven only knows///Connie

--- Diane Aja dianeaja@...> wrote:

> I'm glad to see I'm not the only person out there

> who doesn't know the names of people and things half

> the time. I don't know how those of you who work in

> the outside world can manage to do so. It would be

> impossible for me due so with my memory.

>

> Diane who still baking in Texas

>

>

>

> Re: Re: Just back

> online.. missed everyone

>

> Rose,

>

> The neurologist called and asked to see me.

> There was a glitch at his office and the tests he

> had wanted ordered had not been, it worked out

> though. Since the last time he had seen me he got

> hold of Dr. Stearns and Dr. Stearns sent some

> recommendations to him re me. He is going to do the

> cognitive tests, blood work and also wants to do a

> spinal tap. The symptoms have increased as far as

> my balance and headaches are concerned, and now I

> have this wierd thing where I will look at a word

> but it is not together in my head, i.e. together may

> look like tog et her, I have to keep looking at

> the word until it makes since and becomes together.

> I told the dr and he explained there is a part of

> your brain near the back that controls this and if

> it is being bothered it will cause this problem. My

> speech is still not right, but it's kind of holding

> it's own (or i'm getting used to it). Hopefully, we

> will get this figured out soon, I have to say it

> does get annoying at times. Enough of updating.

>

> Are you doing any better? I certainly hope so,

> everyone here crosses my mind so often, and I try to

> say a prayer when that happens.

>

> Please take care, southern hugs///Connie

>

> Rose mamadogrose@...> wrote:

>

> Connie, MRSA stands for Methicillin resistant

> staph aureus. Staph aureus is a common skin bug we

> all carry, but if it gets in through a break in the

> skin, all hell can break loose. We used to just see

> the resistant strain in the hospital or nursing

> homes, but now they are seeing CA-MRSA

> (community-acquired). It's becoming common among

> athletic teams because of the close contact & skin

> breaks. In the past MRSA was sensitive to

> Vancomycin, which as Tracie (I think it was Tracie?)

> wrote, can be very toxic itself. There are now

> strains of staph aureus that are resistant to

> Vancomycin, called VRSA. Having MRSA doesn't mean

> than you are totally hopeless. There can still be

> antibiotics that will cover it, but you need a

> culture & sensitivity to know, and then you must be

> absolutely meticulous about taking it correctly. I

> was always taught that you needed IV treatment also,

> but they are apparently treating it with some oral

> antibiotics. There is some controversy over a

> prevention measure, using an antibiotic ointment in

> the nostrils, which is the most common entry point.

> Bactroban is the ointment, which has to be applied

> several times a day for weeks. Many infectious

> disease specialists feel that the use of Bactroban

> will just help develop more antibiotic-resistant

> organisms.

>

> This is an important topic that everyone needs

> to

=== message truncated ===

__________________________________________________

[Guest guest]

Trust me Diane, it can be quite a game at times. Lots

of notes, apologies to clients for the fouled up

sentences that don't make sense, and working for an

organization that it's whole goal is to keep disabled

people working. Otherwise, heaven only knows///Connie

--- Diane Aja dianeaja@...> wrote:

> I'm glad to see I'm not the only person out there

> who doesn't know the names of people and things half

> the time. I don't know how those of you who work in

> the outside world can manage to do so. It would be

> impossible for me due so with my memory.

>

> Diane who still baking in Texas

>

>

>

> Re: Re: Just back

> online.. missed everyone

>

> Rose,

>

> The neurologist called and asked to see me.

> There was a glitch at his office and the tests he

> had wanted ordered had not been, it worked out

> though. Since the last time he had seen me he got

> hold of Dr. Stearns and Dr. Stearns sent some

> recommendations to him re me. He is going to do the

> cognitive tests, blood work and also wants to do a

> spinal tap. The symptoms have increased as far as

> my balance and headaches are concerned, and now I

> have this wierd thing where I will look at a word

> but it is not together in my head, i.e. together may

> look like tog et her, I have to keep looking at

> the word until it makes since and becomes together.

> I told the dr and he explained there is a part of

> your brain near the back that controls this and if

> it is being bothered it will cause this problem. My

> speech is still not right, but it's kind of holding

> it's own (or i'm getting used to it). Hopefully, we

> will get this figured out soon, I have to say it

> does get annoying at times. Enough of updating.

>

> Are you doing any better? I certainly hope so,

> everyone here crosses my mind so often, and I try to

> say a prayer when that happens.

>

> Please take care, southern hugs///Connie

>

> Rose mamadogrose@...> wrote:

>

> Connie, MRSA stands for Methicillin resistant

> staph aureus. Staph aureus is a common skin bug we

> all carry, but if it gets in through a break in the

> skin, all hell can break loose. We used to just see

> the resistant strain in the hospital or nursing

> homes, but now they are seeing CA-MRSA

> (community-acquired). It's becoming common among

> athletic teams because of the close contact & skin

> breaks. In the past MRSA was sensitive to

> Vancomycin, which as Tracie (I think it was Tracie?)

> wrote, can be very toxic itself. There are now

> strains of staph aureus that are resistant to

> Vancomycin, called VRSA. Having MRSA doesn't mean

> than you are totally hopeless. There can still be

> antibiotics that will cover it, but you need a

> culture & sensitivity to know, and then you must be

> absolutely meticulous about taking it correctly. I

> was always taught that you needed IV treatment also,

> but they are apparently treating it with some oral

> antibiotics. There is some controversy over a

> prevention measure, using an antibiotic ointment in

> the nostrils, which is the most common entry point.

> Bactroban is the ointment, which has to be applied

> several times a day for weeks. Many infectious

> disease specialists feel that the use of Bactroban

> will just help develop more antibiotic-resistant

> organisms.

>

> This is an important topic that everyone needs

> to

=== message truncated ===

__________________________________________________

[Guest guest]

Talk about forgetting the names of things and screwing up on words. I was at the dentist the other day, and the chairside asst keep asking me where my tooth was that was hurting.

I was getting fed up with her attitude (or mine) and kept pointing out that the one she had her frickin pick in was the one that was sending me thru the roof. However, I kept telling her it was "that one" on the right side. All the time, pointing and motioning to the one on the left.

After that fiasco-- I stopped at the grocery store. Ran into a very, very good friend. Could not remember her name for my life. I finally gave her the register for my checkbook-- and said- hey, I lost your number, and I know it's not listed. Can you write it here for me. Well, she's "Janet." and we've only been hanging together for the last 10 yrs.

Tonight and I went out to my favorite apple orchard (the trees are 100 yrs old) and we were splitting firewood. But I kept forgetting to pull back the handle of the hydrolic splitter, or to push it forward when he'd have a huge hunk of wood balanced on it. He wasnt' too happy with the "free" help.

so, tomorrow I go to pulm rehab, then to my therapist, then to lunch, then to a chronic pain support group meeting--then home. It should be 108 out by the time I get out of Chico. UGH. I am looking forward to lunch.

I also loved the orchard. There was a couple of young Bucks-- deer-- hanging out, eating the blackberries, checking the apples to see if they're getting ripe, as well as monitoring the pear trees and the apricot ad peach trees.

Honestly, I can't wait for these to start getting ripe either. LOL!

Thank you all for your kind words and support. i'm trying to dig myself out of my hole-- so hang on. We will be back.

Love to you all,

Tracie

NS Co-owner/moderator

[Guest guest]

, bless your little pea-pickin heart! You keep telling it like it is, girlfriend. I love every word of your letters. And those people that say it's all downhill now; how do they know that? If you are going to live to be 110, you are still climbing! Now there's a scary thought, at least to me. Of course, I'm pretty sure that I'm on the downhill side, being 57. I really don't want to see 115!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Word recalling - Forgetting Names of ThingsDate: Mon, 17 Jul 2006 00:54:36 -0700 (PDT)

....My husband took me out for my 50th b-day today and some other members of my family were also invited. One of my good friends stopped by too. I panicked when I knew i had to introduce her and remember her name and all their names. But I did it! What a funny/sad thing to be happy about. People have no idea what we go through do they... I got excited and proud that I could remember my own family's names....lol. ...then again it's kinda sad. Maybe it was that strawberry daiguirie(sp?) I had. Yeah, Tracie, I took extra milk thistle when I got home....lol. Somebody gave me a journal today, too. They are finally getting me stuff that's ME. At least three people asked me how I felt about turning 50...one person said it's all down hill. I said...Hey, I woke up yesterday(my real b-day) and thought Hey, I made it! I made it to see 50! I had a big frickin smile on my face all day. The last decade has been pretty bad... so I was just glad I made it this far. My comments kinda shocked and surprised them but it's all the truth now ain't it..... Despite the fact that it was nearly 100 here I felt great. It's so nice to have a really great day....it kinda makes up for the zillion that sucked. hugs S.tiodaat@... wrote:

This is where the Neuropsych testing should come in. Our MD's fall on that "you're getting older" bs too, and shrug it off. But for us, it's a true dementia issue caused by our brains being hit with the sarc in the area of the Right Frontal Lobe--where all the "executive functions" happen. Recall, short-term memory, problem solving, personality, sexuality, temper, multi-tasking are all in this part of the brain.The different tasks that you do with Neuropsych tests require a different area of the brain to complete, so if you're getting signals that are shorting out -- you won't be able to do all the task requires. It can be the one set of tests that can confirm NS when there are no "granulomas or white spots" on the brain Ct's and such. If they work it with the EEG (brain wave study) and the EMG's (muscle studys) it can really show where signals aren't getting from the brain to your legs and feet, or hands, and it can verify that complaint that "Yes, this is why you can't hold that coffee cup, or why your fork does summersaults in your hand when you're eating spaghetti. (and wearing a white blouse.) The neuropsych testing along with the other two tests, can really help to pull the diagnosis out of the hat. It was what confirmed my NS and got my SSDI approved. Take care,TracieNS Co-owner/moderator

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

Get the new Windows Live Messenger!

[Guest guest]

, bless your little pea-pickin heart! You keep telling it like it is, girlfriend. I love every word of your letters. And those people that say it's all downhill now; how do they know that? If you are going to live to be 110, you are still climbing! Now there's a scary thought, at least to me. Of course, I'm pretty sure that I'm on the downhill side, being 57. I really don't want to see 115!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Word recalling - Forgetting Names of ThingsDate: Mon, 17 Jul 2006 00:54:36 -0700 (PDT)

....My husband took me out for my 50th b-day today and some other members of my family were also invited. One of my good friends stopped by too. I panicked when I knew i had to introduce her and remember her name and all their names. But I did it! What a funny/sad thing to be happy about. People have no idea what we go through do they... I got excited and proud that I could remember my own family's names....lol. ...then again it's kinda sad. Maybe it was that strawberry daiguirie(sp?) I had. Yeah, Tracie, I took extra milk thistle when I got home....lol. Somebody gave me a journal today, too. They are finally getting me stuff that's ME. At least three people asked me how I felt about turning 50...one person said it's all down hill. I said...Hey, I woke up yesterday(my real b-day) and thought Hey, I made it! I made it to see 50! I had a big frickin smile on my face all day. The last decade has been pretty bad... so I was just glad I made it this far. My comments kinda shocked and surprised them but it's all the truth now ain't it..... Despite the fact that it was nearly 100 here I felt great. It's so nice to have a really great day....it kinda makes up for the zillion that sucked. hugs S.tiodaat@... wrote:

This is where the Neuropsych testing should come in. Our MD's fall on that "you're getting older" bs too, and shrug it off. But for us, it's a true dementia issue caused by our brains being hit with the sarc in the area of the Right Frontal Lobe--where all the "executive functions" happen. Recall, short-term memory, problem solving, personality, sexuality, temper, multi-tasking are all in this part of the brain.The different tasks that you do with Neuropsych tests require a different area of the brain to complete, so if you're getting signals that are shorting out -- you won't be able to do all the task requires. It can be the one set of tests that can confirm NS when there are no "granulomas or white spots" on the brain Ct's and such. If they work it with the EEG (brain wave study) and the EMG's (muscle studys) it can really show where signals aren't getting from the brain to your legs and feet, or hands, and it can verify that complaint that "Yes, this is why you can't hold that coffee cup, or why your fork does summersaults in your hand when you're eating spaghetti. (and wearing a white blouse.) The neuropsych testing along with the other two tests, can really help to pull the diagnosis out of the hat. It was what confirmed my NS and got my SSDI approved. Take care,TracieNS Co-owner/moderator

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[Guest guest]

, bless your little pea-pickin heart! You keep telling it like it is, girlfriend. I love every word of your letters. And those people that say it's all downhill now; how do they know that? If you are going to live to be 110, you are still climbing! Now there's a scary thought, at least to me. Of course, I'm pretty sure that I'm on the downhill side, being 57. I really don't want to see 115!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Word recalling - Forgetting Names of ThingsDate: Mon, 17 Jul 2006 00:54:36 -0700 (PDT)

....My husband took me out for my 50th b-day today and some other members of my family were also invited. One of my good friends stopped by too. I panicked when I knew i had to introduce her and remember her name and all their names. But I did it! What a funny/sad thing to be happy about. People have no idea what we go through do they... I got excited and proud that I could remember my own family's names....lol. ...then again it's kinda sad. Maybe it was that strawberry daiguirie(sp?) I had. Yeah, Tracie, I took extra milk thistle when I got home....lol. Somebody gave me a journal today, too. They are finally getting me stuff that's ME. At least three people asked me how I felt about turning 50...one person said it's all down hill. I said...Hey, I woke up yesterday(my real b-day) and thought Hey, I made it! I made it to see 50! I had a big frickin smile on my face all day. The last decade has been pretty bad... so I was just glad I made it this far. My comments kinda shocked and surprised them but it's all the truth now ain't it..... Despite the fact that it was nearly 100 here I felt great. It's so nice to have a really great day....it kinda makes up for the zillion that sucked. hugs S.tiodaat@... wrote:

This is where the Neuropsych testing should come in. Our MD's fall on that "you're getting older" bs too, and shrug it off. But for us, it's a true dementia issue caused by our brains being hit with the sarc in the area of the Right Frontal Lobe--where all the "executive functions" happen. Recall, short-term memory, problem solving, personality, sexuality, temper, multi-tasking are all in this part of the brain.The different tasks that you do with Neuropsych tests require a different area of the brain to complete, so if you're getting signals that are shorting out -- you won't be able to do all the task requires. It can be the one set of tests that can confirm NS when there are no "granulomas or white spots" on the brain Ct's and such. If they work it with the EEG (brain wave study) and the EMG's (muscle studys) it can really show where signals aren't getting from the brain to your legs and feet, or hands, and it can verify that complaint that "Yes, this is why you can't hold that coffee cup, or why your fork does summersaults in your hand when you're eating spaghetti. (and wearing a white blouse.) The neuropsych testing along with the other two tests, can really help to pull the diagnosis out of the hat. It was what confirmed my NS and got my SSDI approved. Take care,TracieNS Co-owner/moderator

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