New to Group

[Guest guest]

Hello , Michele from Md here! We are probably neighbors and don't know it

: ) My primary care physician is not only very understanding about FMS, his

wife has had it for decades, and he is very supportive. He is going to be there

through my disability process. I got very lucky. I understand what you mean

about all you can do to get out of bed! This is a great group, I'm new, and

already I've gotten many wonderful Fibro Hugs *S*. I feel I can type all about

a crummy day and there's someone out there who understands! Maybe we could go

to private emails and find out what part of Md we are in and perhaps talk about

what insurances etc, and I could help. Anything I could do. Please email me at

webmommy@... anytime.

new to group

New to group and thought I'd introduce myself.....

I'm 36 and live in MD and have thyroid disease. I feel that I have FMS but doc

hasn't wanted to diagnose it since my RA

levels were up and it could be the RA or it could be the thyroid making the RA

levels go up and I do have FMS.

[Guest guest]

,

Welcome to the group. I really feel that this group is a blessing. It has

helped me realize that many of my symptoms are other people's too and that I

am " normal " .

It really is comforting to know that there is someone out there in the same

boat as you, or should I say bed?

Welcome and hope you get out of this group what it brings to me: friends!

Much Comfort and Peace

Janice

[Guest guest]

Hi, Bernice. Welcome. I am sorry for your loss. I just lost my mother Joyce

this November -- she was diagnosed with MSA only 2 years. We did not do an

autopsy and don't know whether this is the correct diagnosis (I am beginning

to suspect CBGD). My mother did not have the autonomic symptoms that many

have, but might have developed them had she lived. She was, however, very

devastated by her illness -- it swept through her very fast. For the most

part, she had extreme rigidity, slowness, loss of balance, curling of limbs,

severe head flex, rectal and urinary problems, slurred speech. She took many

PD drugs, but with little or not benefit, it seems.

I am sorry that any of us are members of this club. Debbie

Debbie White

dwhite@...

> New to group

>

>

> Hi all, my name is Bernice Bowers and my husband Ken just passed away this

> past June. I have been caring for him for 13 years and the last

> 6 was told

> he had PSP. He was first diagnosed with Parkinson's and treated for that

> for 6 years. But after his death, we donated his brain to Mayo in

> ville where DR Dickson is doing the PSP research and he informed my

> husband did not have PSP , but rather MSA. That had been

> mentioned about 7

> years ago, as a possibility by one of the Drs. at Loma in Ca. but

> later was diagnosed at Ohio State as PSP.

> Anyway, wanted to thank Pam for the invitation to join this group

> . Will be

> interesting to compare notes with you folks. I have been on the PSP

> listserv, almost from it's inception.

> Thanks for being here.

> Bernice

>

>

>

[Guest guest]

Welcome aboard, Tiffani,

Don't worry about talking about any thing that is wrong with you. We all

have Irritable Bowel Syndrome which is a fancy name for your diarrhea. We can

all relate with the pain and the fatigue you are having and the fact that you

have a hard time with sleep.

You are not alone in all of this. We are here to support and to help you.

There will be people to talk to and to help you with advice about what has

worked for them.

I don't know how many on this list have tinnitus. I am one of those that do.

It looks like you are coping with that and that is good.

Take care,

Irene

co-moderator

[Guest guest]

Welcome aboard, Tiffani,

Don't worry about talking about any thing that is wrong with you. We all

have Irritable Bowel Syndrome which is a fancy name for your diarrhea. We can

all relate with the pain and the fatigue you are having and the fact that you

have a hard time with sleep.

You are not alone in all of this. We are here to support and to help you.

There will be people to talk to and to help you with advice about what has

worked for them.

I don't know how many on this list have tinnitus. I am one of those that do.

It looks like you are coping with that and that is good.

Take care,

Irene

co-moderator

[Guest guest]

Yes you CAN wait that long!!! Take care of YOU first, or you won't be in

any decent condition to take care of Baby. Yes, some people do become pg

very soon after WLS, but it's not because they tried to. We're not here

to berate them for something they didn't intend to do (some of them

became pg even while on BCP), but instead encourage them... but we are

NOT here to encourage ANYONE to purposefully go against their doctor's

advice!!! NO NO NO!!!

Could you not have your WLS prior to getting married, too, like your

fiancee? That would shorten the time. But believe me, despite what

wet-behind-the-ears youngsters here might say or think, 30 is NOT too

old to have children... it is NOT past prime... in fact, I believe

strongly that having children after 30 can be incredibly beneficial --

to the kids, because they have maturer parents, and to you, because

you've " lived " and you understand more things than you did when you were

twenty. As for the argument that your kids' mom and dad will be the only

ones who look like " grandparents " ... how utterly ridiculous! There are

so many kids nowadays with every shade and stripe and age of parents...

not to mention the ones that actually ARE living with their

grandparents... so that one doesn't fly with me.

If your doctor says wait, then you'd better do it. There is ABSOLUTELY

no reason for someone as young as you to be in that much of a hurry. You

might want to take a good hard look at why you're so impatient... what

are you hoping that having a baby will do for you now, that it can't do

in a couple more years? And since when is a couple of years a long time

to wait? I look back at when I was in college for four years... it

seemed like a long time, but when I look back, those four years were

gone in a blink.

All right, sorry guys for ranting, I just don't know how much more of

this I can take!!! LOL!!!

-Kris

ListMom

mrscupcake598b2@... wrote:

> Hi everyone

>

> I'm jessica. I am thinking of having WLS in Jan of 2002. I am getting

> marrien in Dec. of this year and my Hubby -to be is having his WLS

> this June. I'm glad to have found you guys because the biggest thing

> that keeps me from having the WLS is that I want to have a baby soon.

> If it were up to me i would be preg. when we came back form our

> honeymoon.. I have PCOS and the Drs. told me that if I don't loose

> weight I may never have kids. I'm 27 and weigh 315lbs. if i have the

> WLS in Jan then i'll be 30 before I can get Preg. and I'm not sure if

> I can wait that long. has everyone waited the 12 to 18 months after

> to get preg. or do some people do it sooner. let me know what you did

> or how you handled the decision...

>

> thanks

> jess

>

>

> Children are a reward from the Lord.

> Psalm 127:3

>

>

[Guest guest]

At 11:37 PM 3/6/2002 +0000, you wrote:

> This procedure looks like

>something that might work well for me and so here I am. I emailed my

>ortho doctor today and asked him if he knows much about resurfacing

>and since I have some time before surgery will be imminent, I'm going

>to monitor this list and glean as much info as I can.

Hi neighbor!

You are fortunate to have one of the best resurfacing docs right here in

OR. Dr. Boyd is in Salem and did both my hips, and as you can guess, I am

thrilled with the results. Why don't you send him your x-rays and see what

he says?

Portland OR

Conserve Plus

5/25/01 and 6/28/01

[Guest guest]

Hi ,

Welcome to our group. I think we can all safely say we understand. I

too only have one hip involved and was asked if I had an accident when

younger. Nothing stood out in my mind either. I had scoliosis as a

teen and had to have surgery as a result. I attribute the wear to the

curve in my spine. I had to give up horse back riding as a result of

my spinal surgery. I went back to it after 21 years off. My hip

eventually broke down and I was not willing to give up something that

gave me so much pleasure so I ignored the pain for as long as possible

and took anti-inflammatories until I thought I would have no stomach

left. I did the whole routine of alternative therapies including

Synvisc in the joint. Everything I did gave me extra time, until

finally I could not ride anymore. I realized that the quality of my

life had diminished to the point that everything I was trying to

preserve by avoiding the THR had eroded from my life anyway. I think I

had totally exasperated my doctor. He then suggested resurfing and I

jumped at it. I had waited so long that I had a pronounced limp and

was walking all hunched over. My range of motion was terrible. I

couldn't even do up my shoes. I am 41 and had my surgery 3 weeks ago

and have no regrets so far. I am however dealing with the problems I

had created as a result of comprimised body carriage. It's a catch 22

because had I not stalled I would have been fitted with a THR. You are

very fortunate to have a choice now. Don't let everything break down

too far, delays have their own repercussions, be aware of what they

are. It is your body and you are stuck with it for the rest of your

life. I wish you all the best. I know it is a difficult decision. This

group that started is a godsend. Please, remember that we have

all been there are sharing our experiences also gives us strength.

Dannielle

-- In surfacehippy@y..., " Gibson Graphics " <gibsongraphics@h...> wrote:

> Hello,

>

> My name is and I have a bad hip. I'm 39 and up until about 6

> months ago I was very active, playing basketball 3 days a week, golf,

> gardening, etc. I've been athletic all my life, tennis, skiing,

> basketball, waterskiing, barefoot skiing, etc. About 9 months ago my

> left knee started hurting during b-ball and then I had a continual

> groin pain which I though was some kind of muscle condition. I

> eventually got x-rays and saw an orthopod and he told me my hip is

> basically history- advanced arthritis? in the one hip but no problems

> elsewhere. He thinks I may have had some kind of injury when I was

> younger that caused this, but I can't remember anything in particular.

>

> My doc says I'll eventually have to have THR, but only when I can't

> stand the pain or avoidance of pain. This was hard to swallow for me

> being as active as I am and it has been difficult to accept that

> certain activities such as b-ball are ended for the rest of my life.

> I can still get around with a pronounced limp and can play a pretty

> decent game of golf though it's getting harder to walk 18 holes and I

> take a cart whenever possible.

>

> Which brings me to today. I thought I'd surf for a little more info

> on THR and I come across the activejoints site and the m/m

> resurfacing and eventually this list. This procedure looks like

> something that might work well for me and so here I am. I emailed my

> ortho doctor today and asked him if he knows much about resurfacing

> and since I have some time before surgery will be imminent, I'm going

> to monitor this list and glean as much info as I can.

>

> TIA

>

> Gibson

> Bandon, Oregon

[Guest guest]

I had morning sickness with my other 2 all day all through the pregnancy (pre

op) this time I just felt DRAINED and nauseated/vomiting for the first trimester

or so. I was so completely exhausted.. now I am down to my last few weeks and

the exhaustion has returned, with some slight nausea. I have learned that I just

don't eat enough at night to sustain a " good feeling " in the morning.. so I eat

something right when I get up and right before I go to bed. That is helping with

the nausea but not the fatigue.. LOL!

EDD 4-1

new to group

Hi. My name is . I am new to the group. I had RNY on 5/17/01

and just found out that I am 8 weeks pregnant. I am very happy since

we wanted to have more kids but I am also worried about possible

negative effects on the baby, my ability to nurse, etc... My main

problem so far is that I have the worst morning sickness or should I

say all day sickness. I feel like I did when I was first post op.

Nothing agrees with my stomach, everything smells bad, I am nausaus

and dizzy all day long, I can't sleep through the night... It has

been 8 years since I had my last kid and I don't remember it being

this bad with him or with my first. Has anyone else noticed that

it's harder post op? I am also losing weight (1 lb) instead of

gaining. I try to munch small things throughout the day but always

have this awful taste in my mouth and could puke at any second.

Dumping seems to have gotten worse and the taste of artificial

sweetener is making me sick. Also, I need an afternoon nap daily or

I can't get through the day. By the way, I'm 35 years old. Any tips

would be greatly appreciated. Thanks for listening to me complain.

Children are a blessing, and a gift from the Lord. -Psalm 127:3

[Guest guest]

I can only agree strongly

I was resurfaced by Mr T G Kavanagh at St 's on 3/02/2002

I received outstanding consultant and nursing care - the whole experience was

extremely positive

I believe that Mr Kavanagh has received training from McMinn/Treacy at

Birmingham and has now carried out in excess of 200 resurfs

I'm now approx 15 weeks post op and have very good mobility and no pain. Last

weekend I played 45 holes of golf. I'm quite keen to play squash again ( I

played 2-3 times a week for about 25 years) but will await guidance from Mr

Kavanagh in this regard (I'm seeing him on 5/06/02 for the 3 month post op

consultation)

I've enjoyed (passively up until now) the website and have found it very

beneficial

Good surfing to all of you

Glenn O'Brien

Re: new to group

I was resurfaced on March 28th by Field at St. 's

Hospital at Cheam, Surrey, just south of London. I was and remain

completely satisfied with the entire experience. Mr. Field has a

website which sets out the necessary preliminary information and X-

ray particulars for evaluation, and this is probably the most

efficient way to get the ball rolling. It's

www.hipandkneesurgeon.co.uk. If you're from outside the UK, this

excellent facility is about equidistant(35 minute taxi ride) from

Heathrow and Gatwick. Best wishes-- Gord

> Sorry to inquire about what is probably old hat to most of you but

> here goes...

>

> My boyfriend Terry is 32 years old with osteoarthritis in his left

> hip. The two orthopods he has seen in the past 6 months are not

very

> familiar with resurfacing and are encouraging THR. Terry is very

> opposed to this as I'm sure many of you were. The one he saw

> yesterday thought resurfacing might be a problem since his socket

is

> somewhat small and his femur head is somewhat large although there

is

> no deformity in either area. Terry is in a great deal of pain on a

> regular basis and on most days is unable to stay on his feet for

> prolonged periods of time. NSAID's do not offer much relief at

all.

> Neither do Glucosamine chondroitin MSM creams or oral supplements.

> He is used to a very active life and as you can imagine, he is

> becoming very depressed and frustrated. I have done some research,

> as has he, and plan on contacting some physicians in the midwest

who

> may be participating in clinical trials. He also plans on being in

> the London area mid-June--should he try to see someone there?

> What is the best approach for this?

> Thanks in advance for your help.

[Guest guest]

Ken

I went on to a single crutch after two weeks and a stick about a week later

The approach from the physio was laissez- faire ie do what you're comfortable

with

There is a booklet from the hospital which sets out the average key stages for

BHR resurfs - these obviously vary from patient to patient

Regards

Glenn

Re: Re: new to group

Hi Glenn,

I had bilateral hip resurfacing on 6/5/02 by Mr Singer in Perth

Scotland. Excellent man and great post-op care. I'm finding the post-op

advice a bit confusing - some say minimal weight-bearing for the first 6

weeks, others seem to weight-bear as soon as they feel comfortable without

support of sticks e.g. around 4 weeks. What advice did you receive?

Ken

[Guest guest]

I am scheduled for bhr.date for op not fixed yet.

avn Lt. hip has resulted in pelvis tilt towards my

left.hence a bad limp - can't walk wo cane.

my os says pelvis will gradually get back to normal

post op. is this true.will it really happen?

would like to know if you had a limp before surgery.

from what u say wks. post op u are completely normal.

thanks in advance.

Ravi

--- Glenn O'Brien wrote:

> I can only agree strongly

>

> I was resurfaced by Mr T G Kavanagh at St 's

> on 3/02/2002

>

> I received outstanding consultant and nursing care -

> the whole experience was extremely positive

>

> I believe that Mr Kavanagh has received training

> from McMinn/Treacy at Birmingham and has now carried

> out in excess of 200 resurfs

>

> I'm now approx 15 weeks post op and have very good

> mobility and no pain. Last weekend I played 45

> holes of golf. I'm quite keen to play squash again

> ( I played 2-3 times a week for about 25 years) but

> will await guidance from Mr Kavanagh in this regard

> (I'm seeing him on 5/06/02 for the 3 month post op

> consultation)

>

> I've enjoyed (passively up until now) the website

> and have found it very beneficial

>

> Good surfing to all of you

>

> Glenn O'Brien

>

>

>

> Re: new to group

>

> I was resurfaced on March 28th by Field at

> St. 's

> Hospital at Cheam, Surrey, just south of London. I

> was and remain

> completely satisfied with the entire experience. Mr.

> Field has a

> website which sets out the necessary preliminary

> information and X-

> ray particulars for evaluation, and this is probably

> the most

> efficient way to get the ball rolling. It's

> www.hipandkneesurgeon.co.uk. If you're from outside

> the UK, this

> excellent facility is about equidistant(35 minute

> taxi ride) from

> Heathrow and Gatwick. Best wishes-- Gord

>

> > Sorry to inquire about what is probably old hat to

> most of you but

> > here goes...

> >

> > My boyfriend Terry is 32 years old with

> osteoarthritis in his left

> > hip. The two orthopods he has seen in the past 6

> months are not

> very

> > familiar with resurfacing and are encouraging THR.

> Terry is very

> > opposed to this as I'm sure many of you were. The

> one he saw

> > yesterday thought resurfacing might be a problem

> since his socket

> is

> > somewhat small and his femur head is somewhat

> large although there

> is

> > no deformity in either area. Terry is in a great

> deal of pain on a

> > regular basis and on most days is unable to stay

> on his feet for

> > prolonged periods of time. NSAID's do not offer

> much relief at

> all.

> > Neither do Glucosamine chondroitin MSM creams or

> oral supplements.

> > He is used to a very active life and as you can

> imagine, he is

> > becoming very depressed and frustrated. I have

> done some research,

> > as has he, and plan on contacting some physicians

> in the midwest

> who

> > may be participating in clinical trials. He also

> plans on being in

> > the London area mid-June--should he try to see

> someone there?

> > What is the best approach for this?

> > Thanks in advance for your help.

>

>

>

[Guest guest]

In a message dated 5/25/02 6:37:37 AM Eastern Daylight Time,

glennobrien@... writes:

> There is a booklet from the hospital which sets out the average key stages

> for BHR resurfs - these obviously vary from patient to patient

Would love to get a copy of this booklet as my resurfacing doctor doesn't

feel I need rehab.

Diane

[Guest guest]

Diane

E-mail your address and I'll send you a photocopy of the booklet

Rgds

Glenn

Re: Re: new to group

In a message dated 5/25/02 6:37:37 AM Eastern Daylight Time,

glennobrien@... writes:

> There is a booklet from the hospital which sets out the average key stages

> for BHR resurfs - these obviously vary from patient to patient

Would love to get a copy of this booklet as my resurfacing doctor doesn't

feel I need rehab.

Diane

[Guest guest]

I have lived 45 years with a dysfunctional hip, and now am ready (I think)

to proceed with a replacement. A friend just told me about resurfacing vs.

THR last week. So I'm just beginning this exploration process and am quite

curious about the current state of the art of resurfacing. My Seattle

surgeon said I unquestionably qualify for the MoM THR, and I feel reasonably

comfortable with my awareness of that option. (I still want to know the

surgeon's own experience with post-op femoral fractures and dislocations.)

On the resurfacing side, though, can anyone tell me:

1. Are the resurfacing prosthetics made of titanium, as are the THR

components I'm looking at?

2. Are the resurfacing prosthetics, femoral and/or acetabular, fixed by

cement or are they the porous, cementless fixtures?

Matt

Alegria & Company

Anderton@...

*

509/ 575-1065 Voice

*

509/ 853-2111 Direct Dial

*

509/ 575-1755 Facsimile

Privileged and confidential communication. If you are not the addressee, you

may not read, copy, or distribute this email. If you receive this email in

error, please advise us by return email and call . Thank you.

Re: Impressed with Dr. Mont

> I sent my X-rays to Dr. Mont a couple of weeks ago and finally

> received a call from him. I was very impressed. He called me at

> home at 6pm on Labor Day. You should have seen the look on my

wife's

> face when she saw his name/number on the caller ID. He told me I

was

> an excellent candidate for metal-on-metal surface replacement

which

> made me happy. Now if I can just get my insurance co. to be

happy

> to pay. Hope to give them a cost comparison of C+ vs. THR.

Hi ! Sounds like you had a wonderful weekend!

For a cost comparison, you might try Totallyhip.org .... more folks

there have THR's. And while you're compiling " reasons you're saving

the insurance company money " don't forget the lower rate of

dislocation with a resurf. I think I saw statistics on Midland

Medical Technology's (the Birmingham folks) website that showed just

a couple of dislocations in 1,740 devices installed from '94

to '99. Also throw in the past problems with metal-to-poly, &

osteolysis; and what the heck - Med. Tech hasn't had any

recalls. And maybe someone like Cap'n Amaze_O or Jeff Cranston

would comment on the benefits of Mont's surgical approach??

Go , go!!! Deb

[Guest guest]

Matt,

I would certainly research the resurfacing before proceeding with a THR.

I couldn't stand the thought of that huge stem down my femur. I felt

so lucky to find this site. I'm sorry I don't have the technical

answers to your questions. I think you might find the video clips of

the resurfacing procedure versus a THR on Dr. Gross's website very

interesting. I know I did. My husband, who is a draftsman, said, " The

difference is night and day. The resurfacing looks like a real hip. "

Well said. The URL is www.grossortho.com/

The Corin and companies will probably have the technical answers

on their sites if you don't get the response you're seeking from others

in this group.

Good luck,

Gwen (tandemskater)

Matt Anderton wrote:

>I have lived 45 years with a dysfunctional hip, and now am ready (I think)

>to proceed with a replacement. A friend just told me about resurfacing vs.

>THR last week. So I'm just beginning this exploration process and am quite

>curious about the current state of the art of resurfacing. My Seattle

>surgeon said I unquestionably qualify for the MoM THR, and I feel reasonably

>comfortable with my awareness of that option. (I still want to know the

>surgeon's own experience with post-op femoral fractures and dislocations.)

>

>On the resurfacing side, though, can anyone tell me:

>

>1. Are the resurfacing prosthetics made of titanium, as are the THR

>components I'm looking at?

>

>2. Are the resurfacing prosthetics, femoral and/or acetabular, fixed by

>cement or are they the porous, cementless fixtures?

>

>

>

>

>Matt

>

>Alegria & Company

>Anderton@...

>

>*

>

> 509/ 575-1065 Voice

>*

>

> 509/ 853-2111 Direct Dial

>*

>

> 509/ 575-1755 Facsimile

>

>

>Privileged and confidential communication. If you are not the addressee, you

>may not read, copy, or distribute this email. If you receive this email in

>error, please advise us by return email and call . Thank you.

>

> Re: Impressed with Dr. Mont

>

>

>

>

>>I sent my X-rays to Dr. Mont a couple of weeks ago and finally

>>received a call from him. I was very impressed. He called me at

>>home at 6pm on Labor Day. You should have seen the look on my

>>

>wife's

>

>>face when she saw his name/number on the caller ID. He told me I

>>

>was

>

>>an excellent candidate for metal-on-metal surface replacement

>>

>which

>

>>made me happy. Now if I can just get my insurance co. to be

>>

>happy

>

>>to pay. Hope to give them a cost comparison of C+ vs. THR.

>>

>

>Hi ! Sounds like you had a wonderful weekend!

>For a cost comparison, you might try Totallyhip.org .... more folks

>there have THR's. And while you're compiling " reasons you're saving

>the insurance company money " don't forget the lower rate of

>dislocation with a resurf. I think I saw statistics on Midland

>Medical Technology's (the Birmingham folks) website that showed just

>a couple of dislocations in 1,740 devices installed from '94

>to '99. Also throw in the past problems with metal-to-poly, &

>osteolysis; and what the heck - Med. Tech hasn't had any

>recalls. And maybe someone like Cap'n Amaze_O or Jeff Cranston

>would comment on the benefits of Mont's surgical approach??

>

>Go , go!!! Deb

>

>

>

>

[Guest guest]

,

Welcome to the group! I'm sorry that you're wife is ill. Most of us know

that it isn't easy to live with this disease, and I'm sure it's not easy to

be the caretaker for one of us either!

I think it's a wonderful idea to have a party for your wife's one year

anniversary of dealing with this disease. I've found that I feel better

when I just embrace the disease, instead of trying to fight it

off.....especially since it's not going anywhere!

I'm sure you'll find this group as helpful and supportive as I have in my

short time here. Anyway, I wish the best of luck for both you and your

wife! I hope to hear from you again soon.

Neisa

> [Original Message]

>

> To: <Neurosarcoidosis >

> Date: 7/30/2003 6:08:23 PM

> Subject: New to group

>

> Hello,

> I am new to the Sarcoidosis group. While I (thankfull) don't have

> neurosarcoidosis, my wife does. She began showing the initial

> symptoms about a year ago. Since then things got bad, but we've come

> a long way back. I say we, like I had much to do with it!:-)

>

> Anyway, I am looking for opinions on an idea I came up with this

> morning. I just got done reading Duffy's book about her go

> around with this " wonderful " condition and I liked her take on how

> she has adjusted her attitude and is looking at some of the small

> pleasures in life. My idea is throw my wife a little dinner party to

> celebrate living through one year with neurosarcoidosis. Emphasis on

> living. My thought is to give thanks that she is still with us and

> is able to function at a realatively high level. I also want to be

> (hopefully) able to laugh in the face of this.

>

> Any thoughts?

>

>

>

>

>

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

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

>

> Come stand by my side where I am going,

> Take my hand if I should stumble and fall,

> It's the strength and love that you share,

> That gives me what I need most of all.

> - Hoyt Axton

>

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

>

>

>

[Guest guest]

Hi kyle, welcome to the group....but we are sorry to hear your wife suffers from this disease... I think the dinner party with the emphasis on life is a great idea..... its still early yet in her disease... I hope she is getting the treatment she needs and not being put off by the medical field... they tend to put it off till it gets really bad... then there is permanent damage... Just take good care of her.. and don't let anything slide... be there for her.. and fight her battles cause there are gonna be days she's not gonna fell like fighting them...

If you need help, a place to vent. or just want to talk... feel free to count on us.. and we'll do what we can....

Good luck to you and your wife...

Big Hug,

-- New to group

Hello,

I am new to the Sarcoidosis group. While I (thankfull) don't have

neurosarcoidosis, my wife does. She began showing the initial

symptoms about a year ago. Since then things got bad, but we've come

a long way back. I say we, like I had much to do with it!:-)

Anyway, I am looking for opinions on an idea I came up with this

morning. I just got done reading Duffy's book about her go

around with this "wonderful" condition and I liked her take on how

she has adjusted her attitude and is looking at some of the small

pleasures in life. My idea is throw my wife a little dinner party to

celebrate living through one year with neurosarcoidosis. Emphasis on

living. My thought is to give thanks that she is still with us and

is able to function at a realatively high level. I also want to be

(hopefully) able to laugh in the face of this.

Any thoughts?

[Guest guest]

KYLE,

THAT IS ONE OF THE SWEETEST THINGS THAT I HAVE HEARD IN A LONG

TIME. YOUR WIFE IS VERY LUCKY TO HAVE YOU THERE, ESPECIALLY WHEN YOU

ARE ALSO GOING THROUGH YOUR OWN HELL. PLEASE TAKE SOME PICS, AND

SHARE THEM WITH US,,IT WILL BE LIKE WE ARE ALL TOGETHER WITH YOU.

THINKING OF YOU ALWAYS,,,

LOVE FROM IL

LYNNE

> Hello,

> I am new to the Sarcoidosis group. While I (thankfull) don't have

> neurosarcoidosis, my wife does. She began showing the initial

> symptoms about a year ago. Since then things got bad, but we've

come

> a long way back. I say we, like I had much to do with it!:-)

>

> Anyway, I am looking for opinions on an idea I came up with this

> morning. I just got done reading Duffy's book about her go

> around with this " wonderful " condition and I liked her take on how

> she has adjusted her attitude and is looking at some of the small

> pleasures in life. My idea is throw my wife a little dinner party

to

> celebrate living through one year with neurosarcoidosis. Emphasis

on

> living. My thought is to give thanks that she is still with us

and

> is able to function at a realatively high level. I also want to

be

> (hopefully) able to laugh in the face of this.

>

> Any thoughts?

>

>

[Guest guest]

KYLE,

I THINK THE DINNER PARTY IS A W ONDERFUL IDEA!! IT WOULD SURE MAKE UR

WIFE FEEL GOOD AND REINFORCE HER AWARENESS OF YOUR LOVE. IT IS NICE WHEN

THE ONES WE LOVE DONT PITY US IN THIS TIME OF ILLNESS BUT, CONTINUE TO HAVE

PATIENCE AND UNDERSTANDING. HAVE U STARTED THE WHOLE SPIEL WITH THE DOCS

AND TESTS AND HOSPITAL STAYS? WHAT KIND OF SARCOID DOES SHE HAVE?

MY NAME IS NICOLE AND I AM 20, THE BABY OF THE GROUP. SOMETIMES KNOWN AS

CARROTS. I GO TO SCHOOL IN TOWSON MARYLAND BUT I LIVE IN NEW JERSEY. I

HAVE NEUROSARCOID AND HAVENT HAD THE PLESURE OR JOY OF BEING POSTIVELY

DIAGNOSED YET BUT DEAL WITH THE ONCOMING EPISODES IN HOPE FOR A POSITIVE

TEST.

JUST KNOW THAT IN TIME THERE WILL BE SOME VERY TRYING DAYS FOR BOTH YOU

AND YOUR WIFE AS WELL AS THE FAMILY, BE HER FRIEND. LISTEN TO HER CRY OR

YELL OR BE ANGRY. BUT ALSO DONT FORGET ITS ALSO OK FOR U TO WANT TO YELL OR

CRY AND BE ANGRY TOO.

WE ARE A GOOD GROUP, A DIVERSE, SPECIAL KIND OF PEOPLE ARE HERE AND WE ALL

LIVE IN DIFFERENT PARTS OF THE COUNTRY AS WELL AS THE WORLD. SARCOID

BROUGHT US HERE AND WE ARE HAPPY TO HAVE U AND HER APART OF OUR FAMILY.

NICOLE AKA CARROTS

>

>Reply-To: Neurosarcoidosis

>To: Neurosarcoidosis

>Subject: New to group

>Date: Wed, 30 Jul 2003 22:08:19 -0000

>

>Hello,

>I am new to the Sarcoidosis group. While I (thankfull) don't have

>neurosarcoidosis, my wife does. She began showing the initial

>symptoms about a year ago. Since then things got bad, but we've come

>a long way back. I say we, like I had much to do with it!:-)

>

>Anyway, I am looking for opinions on an idea I came up with this

>morning. I just got done reading Duffy's book about her go

>around with this " wonderful " condition and I liked her take on how

>she has adjusted her attitude and is looking at some of the small

>pleasures in life. My idea is throw my wife a little dinner party to

>celebrate living through one year with neurosarcoidosis. Emphasis on

>living. My thought is to give thanks that she is still with us and

>is able to function at a realatively high level. I also want to be

>(hopefully) able to laugh in the face of this.

>

>Any thoughts?

>

>

>

_________________________________________________________________

MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*.

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[Guest guest]

Hi , Welcome to the group, sorry your wife is sick. This is a very helpful group and are very knowledgable about many aspects of this illness. Its also a good place to come and vent, rant, whine whatever you may need at the moment. I think the party is a great idea and as another member had suggested maybe she should nap before the party so she doesn't tire so easily.

Good Luck. If i can ever help in any way let me know.

Faith makes all things possible,Love makes it easy.......................Jan

[Guest guest]

Hi Jolene

Welcome to the group!

Caroline

Lap RNY 5/2/03

367/290/150

www.tinyurl.com/bkld

> hi everyone i am Jolene and I had gastric bypass open may 2003 and

> have lost 70 lbs so far. I am looking to meet and find new friends

> and people who live in chicago or surrounding suburbs who have had

it

> or are considering it and have been through BTC in belvediere

> Illinois. Pls contact me at my email or u can also join my gastric

> bypass group also just let me know if u are intrested thanks and

> hello to everyone.

>

> Jolene

[Guest guest]

I just wanted to say hello to everyone. I am new to this group, but

belong to two others so format is not new.

Information:

Name:

Age: 52 next month

Doctor: Cacchione

Hospital: Norton, Louisville, KY

Surgery: RNY July 18, 2003

Starting weight: 285

Present Weight: 245

Goal Weight: 135

I feel I am losing slower than others but I am satisfied with what I

have lost so far. It is hard to believe that it has only been 10

weeks. My 3 month doctor's appointment is October 28,2003.

I happened upon this website and liked all the information you have

put together to help people who are pre/post op. Very informative.

I can see that a lot of effort and thought has gone into the

information you have gathered and I want to thank you for all your

hard work.

WELL DONE!

[Guest guest]

HI Glenda,

Brain sarcoidosis and neurosarcoidosis and central nervous system sarcoidosis are all interchangeable.

Many of us have multiple systems in our bodies that are effected by the sarcoidosis. I have biopsy proven sarcoidosis in my lungs and lymph nodes. I have it in my liver, eyes, bloodstream (vasculitis), bones, muscles and ligaments. As well as in my brain.

So far, the way it's effecting my brain is by interferring with speech, thought processes like multi-tasking (cooking the spaghetti and the sauce at the same time so that everything is ready at once), or problem solving. I went to vote yesterday, and when I walked out of the polling place, I took a wrong turn, found myself lost on the other side of the building, and had no idea where I was, or where my car was parked. Thank god there was so little on the ballot (74 people to choose from for Governor of California-- and yes, so little to choose from. . .). Anyhow, away from politics. LOL!

I also find that I have nasty night sweats, total exhaustion, fatigue, joint and muscle pain and weakness, my fingers and toes are taking on a life of their own--there is no way I could bend them in the direction they're heading; shortness of breath, confusion, short-term memory loss, and so much more.

Neuro is the science of how the nerve pathways send the signals to the different parts of the brain, so that our bodies do what they should do. The central nervous system controls the portion of the brain that houses the pituatary (sp) gland, thalmus and hypothalmus-- which regulates things like hormones, heart beat,body temperature, etc. When the brain is effected with granulomas or even in the absence of granulomas- like with vasculitis, the brain and/or blood vessels become inflammed and with granulomas- put pressure on parts of the brain so that the brain can't send the correct signals to the rest of the body.

Many of us will never show a granuloma in the brain, but because of damage done by the inflammation, we can't think or function like we used to do. This is a website that explains the brain and neurological disorders -

http://www.ninds.nih.gov/

Hope this helps,

Tracie

[Guest guest]

Glenda,

I was

told I have NeuroSarc. I was told I probably have a lesion in

the brainstem where the nerves cross over. I had an inconclusive MRI, my doc said “it

could be to small to see, but the symptoms told him

where the lesion is, or so he thinks. I have had many strange symptoms. I have left side Neuropathic

pain, my left foot the outside and the little toe burn most of the time, which

sends these burning type pain up the leg.

I have some of the same pain in the left hip. The left side of my face remains numb

all the time, but I get the trigieniaml pain from

time to time. I have transient paralysis on that side.

I started

9 years ago in my lungs, pred. remission. Next episode

worse, pred. remission. Next worse, pred

didn’t work so hot, and made me crazy, each time I’ve had to take

it the side effects and the psychosis get worse, not I have a love/hate

relationship with the drug. I am on

1 mg/daily, and only have a week left and I’m

off. I have been weaning off the pred. 1mg/month for some time now. Each episode got worse! I now have pulmonary and systemic/skin

involvement taking plaquanil for that. Now with the neurosarc,

I am on. Methotrexare, plaquanil, neurontin,

nortriptyline, ativan and effexor, and vicodin for the

pain, which barely touches it, but takes the edge off. I tried duragisic

patch, got N & V x 10 hours. Saw a pain clinic doc, suggested a nerve block,

but that has a 50/50 chance since this is neuropathic.

Just

quit nusing after 27 years, to see if the stress of

that will help this monster to settle down?? (I loved my job, and feel a little empty

inside). Oh ya

I’m getting Sarc in my joints, my “get

this” my Right little finger, and now my left middle finger. Skin lesions

everywhere!!! I am on the computer

now because my arm started burning from the lesions, and had to get up and rub lotion

all over my arm. ( I did however, find a great lotion, that helps with the

burning sensation of the lesions) it is, of course, Kay visibly fit body

lotion, which is suppose to be awesome for things like stretch marks, spider veins,

helps break down adipose (fat) tissue. I have seen it do all those things, and

found out in desperation that it also works on my sarc

lesions.

So I started

plum, went to systemic, skin, neuro. I had trouble with my ears like I was in

a tunnel and that came and went, drove me crazy. I would get lost, especially while

driving, and sometimes just coming out of a patient’s room, I would

forget where the nurse’s station was? Scary! I had what I called brain fog. The mextho

helped my brain fog and the hearing thing a lot. But seem to have chronic pain now, every

day my left foot hurts, and sometimes the left thigh too.

Ok enough,

now you know the “whole story”.

Glenda

I’m curious, did you ever work in a hospital?

I’m

glad you are doing ok on the prednisone, I can’t

take anything over 20mgs/day anymore and even that is pushing it.

Would

love to hear from you, sorry to rattle on about me, but I guess I’m

feeling a little empty tonight, have since I quit the hospital on Thursday,

Rose knows what I mean, don’t ya

girlfriend?

Anyway,

that’s enough to put you to sleep, which is probably why I’m

up!!

Love

and Prayers to all,

Marla

Re:

New to Group

%

New to Group

I'm new to this group and have been

reading different emails re neurosarcoidosis. I was dx June 2002 after l

1/2 years of symptoms (biopsy). My brain is the only part of my body

effected with granulomas. I am confused with the term

neurosarc. Apparently it is not in the brain only but includes the

body. Can anyone help me to understand the difference. Would like

to hear from brain sarc people also. Thanks, Glenda

~~~~

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Come stand by my side where I am going,

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Come stand by my side where I am going,

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