New Member

[Guest guest]

Hi Alan,

You probably don't know me, but I also post on the MS message boards on AOL, occasionally. I read every day, but don't post as much as I want. I know the ladies on the MS board love your southern "accent" you put in your posts sometimes. I recognize your font and your signature.

I'm and I live in NC. I'm 43, married for 25 years and have 3 kids (24,20,16). I was dx. in March 2000 with RRMS.

Welcome to the list!

Take Care,

NC

Hello,

Just a quick hello to all. I recently joined the group. While I'm not able to actively post as I'd like, I will contribute as I can, if nothing else but to say 'hi.'

[Guest guest]

Welcome, Duane!

NC

Just wanted to say hello. I have been diagnosed with MS since 1998. I live in Kansas. I have a very caring wife that takes care of my MS needs. We have one boy, thats almost 10. Hope everyone had a good Christmas and New Year. Thanks, Duane.

[Guest guest]

Thanks for the welcome , from "The Old North State"

<snicker> Yeah, I didn't change anything up much here from the bbs on AOL..... I get stuck in a rut sometimes. : )

You and me both. The only thing is my screen name on the bbs is different - watch for lindashousefhcc....that's me!

[Guest guest]

watch for lindashousefhcc....that's me!

~~~~~~~~~~~~~~~~~~~~~~

Yes, I recognize that sn. : ) Because of my cognitive issues, I was afraid quite honestly, that if I changed my name up too much, I'd forget it for sign in purposes, etc. <snicker> : x Since Niteshado2 was taken, I had to add the rest. But is close enough for me to remember. I have to laugh at myself sometimes of the things I have to do for memory's sake. I look like some kind of Bond wannabe carrying around my personal tape recorder talking into it all the time.

LOL Between it, and the notes, it's OK. But I don't use those unless I just really, really have to. Which seems to be more and more as time passes. I'm just glad I have those things at my disposal.

,.• ´¨¨)) * ¸.•´ .•´¨¨))((¸¸.•´ ..•´ Alan *™ * ((¸¸.•´* in Alabama We have endured endless peaks of pain and valleys of loneliness; We havelost beloved's we could not live without; yet we have lived.-- Maya Angelou

[Guest guest]

A tape recorder sounds like a good idea! I have a bad habit of writing myself notes and then forgetting where I put them. I need to start carrying around one note pad instead or jotting notes on anything I can find to write on. I only have 2 screen names (different AOL accounts) - any more and I would get confused, too!

Yes, I recognize that sn. : ) Because of my cognitive issues, I was afraid quite honestly, that if I changed my name up too much, I'd forget it for sign in purposes, etc. <snicker> : x Since Niteshado2 was taken, I had to add the rest. But is close enough for me to remember. I have to laugh at myself sometimes of the things I have to do for memory's sake. I look like some kind of Bond wannabe carrying around my personal tape recorder talking into it all the time.

LOL Between it, and the notes, it's OK. But I don't use those unless I just really, really have to. Which seems to be more and more as time passes. I'm just glad I have those things at my disposal.

[Guest guest]

At 05:29 PM 4/25/2004 +0000, tom wrote:

>hi im tom-this is my first post on here. cant wait to meet everyone

>on here it looks like theres some intersesting chats going on! i

>have a page on www.faceparty.com/tommm if anyone wants to see me.

>look forward to chatting more bye for now

Maybe you want to stick your face on the new " a2p2 " page too?

http://PlanetAutism.com/AuSpin/a2p2.htm

(info on how to join at http://PlanetAutism.com/AuSpin/joina2p2.htm)

welcome....

-jypsy

________________________________

Ooops....Wrong Planet! Syndrome

Autism Spectrum Resources

www.PlanetAutism.com

jypsy@...

[Guest guest]

Hi Fee Fee,

Plenty of adults with untethering surgery here!!! What do you want to

know? If you're more specific, you'll get more replies.

Carey, 4th good pain day in a row!!!!

Hove UK

> My name is Felicia. My nickname is Fee Fee. I am 38 years old

born with

> spina bifida. Has anyone had a shunt operation as an adult or

untethering

> of the spinal cord?

>

> _____

>

>

> <http://promos.hotbar.com/promos/promodll.dll?

RunPromo & El= & SG= & RAND=34920 & pa

> rtner=hotbar> Upgrade Your Email - Click here!

>

>

>

>

[Guest guest]

Hi carey,

Pleased to hear you've had a few good days.I've been thinking about you and how

you're getting on. I hope this is the beginning of a better time for you.

Jill . Newcastle UK

Re: New Member

Hi Fee Fee,

Plenty of adults with untethering surgery here!!! What do you want to

know? If you're more specific, you'll get more replies.

Carey, 4th good pain day in a row!!!!

Hove UK

> My name is Felicia. My nickname is Fee Fee. I am 38 years old

born with

> spina bifida. Has anyone had a shunt operation as an adult or

untethering

> of the spinal cord?

>

> _____

>

>

> <http://promos.hotbar.com/promos/promodll.dll?

RunPromo & El= & SG= & RAND=34920 & pa

> rtner=hotbar> Upgrade Your Email - Click here!

>

>

>

>

[Guest guest]

Hi Rose,

I'm sorry that your daughter is having medical problems, but I'm glad to see you

are seeking information before you make any decisions. I agree that you should

get more than one opinion before making the decision on your daughter having

detethering surgery.

I am an adult with a tethered cord that cannot be released due to it being

caused by adhesive arachnoiditis. I have new pain that is being caused by

developing scoliosis.

In my opinion, I believe it would help you to look into the long-range effects

of scoliosis and the current treatments available.

Then you could consider that If you should hear from a doctor that her scoliosis

should be surgically corrected, and if her scoliosis is being caused by the

tethered cord, then it follows that the surgery might not be successful on a

long-term basis if her cord is not released.

If your daughter's scoliosis is being caused by the tethered cord, then it will

get worse as she continues to grow because her cord will not grow, i.e.

'stretch' along with her spinal column.

Also, as her spinal column grows, more tension will be placed on her spinal cord

and MAY start causing other symptoms of tethered cord. The other symptoms

associated with TC are often caused by a trauma, and the added tension on the

cord could be the type of trauma that might cause nerve damage.

I just wanted to give you this point of view to consider since most surgeries

are done to stop the progression of symptoms. In your daughter's case, the

scoliosis might be a symptom of the tethered cord.

Wishing you and your daughter well, and good luck with your decision-making,

V.

Ontario, Canada

rlrml@... wrote:

Hello Everyone,

My eight year old daughter was recently diagnosed with tethered cord and we were

advised by her neurosurgeon to have a surgical procedure done and of course

before my husband and I decide anything we are trying to gather as much

information as possible that best mirrors my child's symptom profile. Which has

been quite a challenge ...as there is no case histories and there are no

available statistics.

Basically, my daughter is exhibiting a 18 degree curvature of the spine. She

suffers from no other symptoms typically associated with young children and

tethered cord (i.e. incontinence, bowel problems, back pain, etc.). The only

thing is the curve of her spine. The neurosurgeon stated that like a lighting

bolt other symptoms could happen, most commonly club foot. Leaving you in a

position that instead of one surgery you are faced with two ...one for the

tethered cord and the other to correct the problem which could have been

prevented.

I am going for another consult next week at Children's Miami Hospital, however,

my neurosurgeon who has an aggresive approach to treatment has basically told me

to expect the extreme opposite...meaning that if they don't see any of the other

symtoms they will not diagnose her with tethered cord.

I'm having a hard time thinking about putting her through a surgery if she isn't

in any discomfort...but what if I opt to monitor and something worse happens.

Or what would happen after surgery...will she have a future of other required

surgeries...the list goes on.

If anyone has any thoughts, or resources that they feel could help us that would

be great.

P.S. I have already spoken with some members of the group responding with

specific questions to better understand your experience and thank you for your

responses...they truly help even if it's just getting a different perspective on

things.

Thanks!!

Rose L.

[Guest guest]

I did want to mention that Headaches are not

really a typical Symptom of Tethered Cord.

They can be a Symptom though, depending on

how tight the Tether is. My Dr.s were pretty

convinced that I should have had Headaches

before my last Detethering, based on how

bad things were, but I didn't.

Me

Nebraska, USA

mymocha@...

> Chronic headaches, as well as back aches, and if she

> says her legs hurt alot, as well as what

> said.

> I know at the " peak " of 's tethered days, she

> all of sudden started wetting the bed, and complained

> of terriable headaches every day, and it hurt to put

> her chin to her chest!

> good luck!

[Guest guest]

Hello to everyone, I am a new member. I have been looking for a new

group to join and get to know other members. The one I have been in

for several yrs. is very inactive but I stayed in it because it

focused on one of my main illnesses. I have I.C. complicated with

Hunner's Ulcers. It is a disease of the bladder, with the pain level

of cancer. There is no cure and the origin is unknown. I am still in

the middle of numerous tests and X rays of my back. I have basically

been told my back is " thrashed " as one Dr. told me. There are so many

blown discs, ruptured discs, crumlbling verts. bone spirs from the

cervical all the way to the end of the cox. bone. The pain is so bad

from both illnesses I hardly sleep, and at other times cannot sit, or

sometimes can only stand. The transitional vert. that joins the

lumbar and sacroial parts of the back together is gone so one part

doesn't want to cary the other. I know this doesn't like a real

medical diagnosis, it's just that I am not writing from the Dr.s

report in medical terms. They have idenified Ostioarthritis,

Arthritis, Fibro. and myofacial pain from many surgeries and a very

badly botched one that almost killed me 10yrs. ago. Oh, anyway...

HELLO to you all, I am hoping to find some new frinds here. FYI, If

at times it seems I am not posting or answering e-mails it is only

because I am going through a period of not being able to sit. So

those are my pain issues which I try not to make them define who I

am, but as you all know is easier said than done. I am married to

a " saint " of a husband (35yrs.) who puts me before everything in his

life, have 2 grown grown children, a son and a daughter, plus 2

lovely grand daughters, one 4 and one 7mo. I am really happy to be in

this group but my sitting time is over. Be back soon Barefoottg

[Guest guest]

Hi Barefoottg: It is so nice to have you join us. My name is Sue and

I'm from Oklahoma. I have 2 girls and 1 son 2 grandsons and 3

granddaugthers. 2 dogs 1 bird and lots of cats. lol Can't count them

anymore to many. We live out in the Country and they just come and

join us so we let them join our family and enjoy seeing them grow up

and have more kittens. We give some away and some stay. lol

Theres a lot of nice people in here and with a lot of pain. We all

have pain that's why we are here. Pain is Pain no matter where and

what it is. It is still pain.

Sometimes we talk about other things that is on our minds just to get

it off. It's really great to be able to do that. We all have to

sometimes.

Well, I hope to see you on again and Welcome to the group.

Love Sue from (Oklahoma)

>

> Hi Barefoottg,

>

> Very nice to meet you, but so sad to have the meeting be on these

terms. Lots of great folks here who are very supportive. Glad you

could join us!

>

> Goodness woman, how do you get by in such pain? I have pain issues

as I have fms, stenosis in my cervical and lumbar area's,

OsteoArthritis, just to name a few. These cause most of my pain

problems. And I couldn't make it without the pain meds. I hope you

get some good ones. That is just terrible that your pain is so bad.

I'm on some pretty strong stuff but without it, I wouldn't be able to

get out of bed in the mornings. Trust me, I've forgotten my bedtime

does before and not been able get up and make my legs and hips work.

I haven't forgotten a bedtime dose since. lol I learn pretty quickly!

>

> Anyway, I just wanted to welcome you for now. I look forward to

getting to know you better. What tribe are you part of? I take it you

are Indian?

>

> Gentle hugs,

> ~Tommie

>

> New Member

>

>

> Hello to everyone, I am a new member. I have been looking for a

new

> group to join and get to know other members. The one I have been

in

> for several yrs. is very inactive but I stayed in it because it

> focused on one of my main illnesses. I have I.C. complicated with

> Hunner's Ulcers. It is a disease of the bladder, with the pain

level

> of cancer. There is no cure and the origin is unknown. I am still

in

> the middle of numerous tests and X rays of my back. I have

basically

> been told my back is " thrashed " as one Dr. told me. There are so

many

> blown discs, ruptured discs, crumlbling verts. bone spirs from

the

> cervical all the way to the end of the cox. bone. The pain is so

bad

> from both illnesses I hardly sleep, and at other times cannot

sit, or

> sometimes can only stand. The transitional vert. that joins the

> lumbar and sacroial parts of the back together is gone so one

part

> doesn't want to cary the other. I know this doesn't like a real

> medical diagnosis, it's just that I am not writing from the Dr.s

> report in medical terms. They have idenified Ostioarthritis,

> Arthritis, Fibro. and myofacial pain from many surgeries and a

very

> badly botched one that almost killed me 10yrs. ago. Oh, anyway...

> HELLO to you all, I am hoping to find some new frinds here. FYI,

If

> at times it seems I am not posting or answering e-mails it is

only

> because I am going through a period of not being able to sit. So

> those are my pain issues which I try not to make them define who

I

> am, but as you all know is easier said than done. I am married to

> a " saint " of a husband (35yrs.) who puts me before everything in

his

> life, have 2 grown grown children, a son and a daughter, plus 2

> lovely grand daughters, one 4 and one 7mo. I am really happy to

be in

> this group but my sitting time is over. Be back soon Barefoottg

>

>

>

>

>

>

[Guest guest]

HI BAREFOOTTG: SORRY FOR THE CAPS I'M HAVING A HARD TIME SEEING TODAY

DO TO MY HIGH SUGAR COUNT LATELY. IT WILL BE BETTER TOMORROW I HOPE

ANYWAY.

WE ARE SO GLAD THAT YOU HAVE JOINED OUR GROUP TO. AND LOOKING FORWARD

IN TALKING TO YOU.

I HAVE OA, O.C.P.D. HIPO THYROID, HIGH BLOOD PRESURRE, CHF, STOMACH

ULCERS, DIABETES, NEUROPATHY, AND A LOT MORE BUT WON'T BORE YOU WITH

THE DETAILS. LOL REALLY IT IS TO EMBARRASSING TO TALK ABOUT. LOL

I'M SO SORRY YOU HAVE TO DEAL WITH SO MUCH PAIN THAT REALLY SOUND BAD

AND I FEEL FOR YOU. YOU ARE IN MY THOUGHTS AND PRAYERS MY DEAR FRIEND.

I HAVE TO GO FOR NOW BUT HOPE TO HEAR FROM YOU SOON.

SUE FROM (OKLAHOMA)

>

> Hello to everyone, I am a new member. I have been looking for a new

> group to join and get to know other members. The one I have been in

> for several yrs. is very inactive but I stayed in it because it

> focused on one of my main illnesses. I have I.C. complicated with

> Hunner's Ulcers. It is a disease of the bladder, with the pain

level

> of cancer. There is no cure and the origin is unknown. I am still

in

> the middle of numerous tests and X rays of my back. I have

basically

> been told my back is " thrashed " as one Dr. told me. There are so

many

> blown discs, ruptured discs, crumlbling verts. bone spirs from the

> cervical all the way to the end of the cox. bone. The pain is so

bad

> from both illnesses I hardly sleep, and at other times cannot sit,

or

> sometimes can only stand. The transitional vert. that joins the

> lumbar and sacroial parts of the back together is gone so one part

> doesn't want to cary the other. I know this doesn't like a real

> medical diagnosis, it's just that I am not writing from the Dr.s

> report in medical terms. They have idenified Ostioarthritis,

> Arthritis, Fibro. and myofacial pain from many surgeries and a very

> badly botched one that almost killed me 10yrs. ago. Oh, anyway...

> HELLO to you all, I am hoping to find some new frinds here. FYI, If

> at times it seems I am not posting or answering e-mails it is only

> because I am going through a period of not being able to sit. So

> those are my pain issues which I try not to make them define who I

> am, but as you all know is easier said than done. I am married to

> a " saint " of a husband (35yrs.) who puts me before everything in

his

> life, have 2 grown grown children, a son and a daughter, plus 2

> lovely grand daughters, one 4 and one 7mo. I am really happy to be

in

> this group but my sitting time is over. Be back soon Barefoottg

>

[Guest guest]

It is great you have found a therapist who has alerted you to BPD and

that you are learning about what went on with your mother.

Even after moving far away, I have still felt guilty for not doing

enough for my mother. It is only in the last few years I have started

to question all the contortions I had to do to make her happy (or fail

at doing so). Nevertheless, I am grateful I moved away many years

ago. I have weeks and months with no upsets. I have had long periods

of time where I could focus on my partner and friends and could explore

interests and community service, etc. without my mother's interference

and claiming of the shared time for herself. Living far away doesn't

solve everything but, for me, it has been a key part of my breaking

free of her and being able to live fully.

Best wishes to you.

[Guest guest]

Thanks for the welcome, Misty. Sorry this took me awhile to respond. I

have been in severe pain all day. I take breaks from laying down to check

my emails every now and then. 'Cause I tired of laying down all day. But

that's pretty much all I can do. I take my pain meds and wait for them to

start working. Anyway, I am going to go now and lay down again. Hope all is

well!

Love, Shan

,

I just wanted to drop you a short note and welcome you to the group.

My name is Misty. I'm 46, happily divorced, and live with my 83 yr old

mother

in South Florida. I've had FM/CFS/ME for the last 29 years...being in a

wheelchair for the last 15 years.

I'm sure you'll like this group as much as I have. Many really nice people

here. I've got a website, FM/CFS/ME Resources, that is devoted to resources

for

people like us. Please let me know if there is anything I can do to help.

Best Wishes,

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

MySpace: http://myspace.com/ctr625

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

Facebook: http://www.facebook.com/p/_Skotland/502509057

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Check out my slideshows: http://ctr62578.slide.com/

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Check out Otis Spunkmeir: http://www.catster.com/cats/364695

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

AIM: CTR62578

MSN: CTR62578@...

Yahoo: howie_lvr@...

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

" Through the good and bad times, I still have my wings, to fly me to my

dreams " ~Flying With Wings by Skotland

>

>Reply-To: Hugs-N-Pain

>To: Hugs-N-Pain

>Subject: Re: New member

>Date: Sun, 6 May 2007 10:30:44 -0700 (PDT)

>

>,

>

>I just wanted to drop you a short note and welcome you to the group.

>

>My name is Misty. I'm 46, happily divorced, and live with my 83 yr old

>mother in South Florida. I've had FM/CFS/ME for the last 29 years...being

>in a wheelchair for the last 15 years.

>

>I'm sure you'll like this group as much as I have. Many really nice people

>here. I've got a website, FM/CFS/ME Resources, that is devoted to

>resources for people like us. Please let me know if there is anything I

>can do to help.

>

>Best Wishes,

>

>Misty Patient & Owner

>FM/CFS/ME Resources

>http://fmcfsme.d-3systems.com/

>

>

>---------------------------------

>Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Yahoo! Autos.

>

>

[Guest guest]

Hi ,

I have not had a chance to continue in Byron 's book yet but to

answer those questions:

What bothers me most is wondering where he is and how drunk he is

getting that leads to how much money he is wasting on it and buying

other's drinks. Some of our friends ask me if I trust him. Well, I

guess I dont on a number of accounts. He says he would never cheat on

me but I dont think that is my worry. It is because of how the

drinking makes him act and how other people see him and then think of

me - like why are you with him? Stuff like that. I just want to find

peace with the situation. He is at the point where he knows he needs

to stop drinking and that is usually when it gets better, but it never

completely goes away. I know that some people can stop drinking for a

long period of time and maybe not ever take another drink like his Dad

and his friend from college. So far, he has not been able to achieve

that goal. Maybe that is what bothers me the most and I dont know if I

want to live with that - but I dont want to give up either. We really

love each other and have been together for 6+ years. He is amazing

when he is sober.

Anyway, thanks for the response and have a great weekend.