Re: (unknown)

June 13, 2003

I'm not an expert, but if nobody here has a better idea, here are my thoughts.

A young person might be able to repair the damage if they stop doing things that

caused the damage in the first place.

She (he?) should be examined to make sure her/his feet/legs are properly

aligned.

Taking glucosamine/chondroitin might help.

Ann

(unknown)

Hi

My 10 year old has recently been diagnosed with what is probably

Chondromalacia! the doctor (a GP)

said to take a pain killer when it hurts and it may probably go

away in a year or two. Not very helpfull or informative so here we

are looking for more info.

Q1 is it really likely to go away?

Q2 is it normal in a young person?

Q3 apart from exercise and a healthy diet is there anything else we

can do?

Thanks in advance

Dave

June 13, 2003

hello Woody and everyone else

you can register on the BMJ.com site for a list of the week's

contents to come to your mail and you can select topics that you

would like to be kept informed about by notification of related

papers in BMJ. 'Public health' has the most relevant topic areas for

hvs and sns. No cost involved and most articles have a link so that

you are can print off an abstract or full text. You can also give a

rapid response to an article on line and if you are lucky it will get

printed in the 'letters'.

On 13 Jun 2003 at 14:59, Woody Caan wrote:

>

> Dear Senate,

>

> Today's BMJ (June 14th page 1285) notes a new report on adolescent

> health:

>

> Bridging the gaps: Health Care for Adolescents

>

> www.rcpch.ac.uk/publications/recent_publications.html

>

> I have not yet tried to download this, but it sounds interesting

for

> those of us into Social Inclusion, or sex, drugs & rock'n'roll...

>

> Woody.

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

> Woody Caan

> a.w.caan@...

>

June 15, 2003

,

I have big time teeth problems with the prednisone. I think that it

weakens the bones in the jaw. I have been on 30 mg for over 3 years now, so

I have noticed a huge difference in my teeth. I have to use the Synsodyne

Toothpaste now. They are very, very sensitive and they break right in half.

This toothpaste really helps me a lot though. Thank goodness for that

stuff. Very depressing, and since I have a high phobia of the dentist, it

s no fun.

Love, Sue #2

-------Orginal Message-------

From: Stillsdisease

Date: Sunday, June 15, 2003 10:32:32 AM

stillsdisease

Subject: (unknown)

Hi...Does anyone have trouble with their teeth breaking or anything?

June 16, 2003

Hi Chuck

thanks for your reply, I think you are right with OS all the

symptoms sound familiar I will see another GP and see how that goes.

Thanks again

Dave

June 16, 2003

I have had a couple fractured teeth but my dentist told me that is normal in

teeth with fillings that are over 15 yrs old.

Lynn Renae Dudenhoefer

lynndude@...

-On any path that you may stroll,

-keep your angel in your soul!

-- (unknown)

Hi...Does anyone have trouble with their teeth breaking or anything?

June 16, 2003

I have had a couple fractured teeth but my dentist told me that is normal in

teeth with fillings that are over 15 yrs old.

Lynn Renae Dudenhoefer

lynndude@...

-On any path that you may stroll,

-keep your angel in your soul!

-- (unknown)

Hi...Does anyone have trouble with their teeth breaking or anything?

June 17, 2003

<<Jay you might want to read some info from site http://educate-

yourself.org/fc/ and then re think your thoughts on H202

Have you been miss lead Jay Town>>

There are people claiming to be " experts " in alternative medicine who do not

recognize valid scientific studies that have determined that H2O2 can cause

stomach cancer. These are quacks who want you to buy their stuff. I stand by

my earlier statement that H2O2 ingested orally has been found to cause stomach

cancer in rats. I know, rats aren't human, but rats also respond with ills

from nicotine and many other substances that are known to cause ills in humans.

If you want other " alternative " medical opinions, go to sites and vendors who

sell oxygen supplements in pill form and they scream louder than anyone that

H2O2 causes stomach cancer, while their product doesn't. The alternative

medicine industry has a problem. There are more scams and shysters out there

than

in the MD field, and they will tell you anything to make a buck.

Jay

June 18, 2003

Umm Sita Welcome. NOW NOW dont be shy. Give us your profile. Meaning your story. OR just read us until you find something that makes you holler.

NH

Mommy to Abby Liz 10-25-94

Mommy to Anne 7-1-99

June 19, 2003

Thanks Jan!!!!!! I have a sister like that myself that doesn't even call

my Mom or come to see her...... I think we should put them all together

and ship them off somewhere far!!!!!

Hi Everyone!!!!!! Have a Great Day!!!!!!

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

June 24, 2003

Hello,

Noooooothey are not bouncing. I have been worried sick about Livvy!What happened

at the doctors?

June 29, 2003

Thanks. I am getting ready toh ead out here and find out what I can do.

(unknown)

Phyllis,

I'm so sorry to hear of your loss, My prayers go out to you and your

family during this time.

Please post as you can and remember, we are all here for you.

Hugs and my condolences.

SillyJuie

In , " phyllis " <pmiller@n...> wrote:

> Big brother Tom died tonight around 10.30.

> just letting everyone know. No details yet.

> Phyllis

>

July 3, 2003

a you are two funny. I could of written your last sentence. Miss 4th birthday cookout will be saturday. AND my house is a mess. LOL

NH

Mommy to Abby Liz 10-25-94

Mommy to Anne 7-1-99

July 4, 2003

,

It is a bad hand day for me, but I just had to write and tell you my heart

goes out to you! There is nothing harder to deal with than unresolved pain that

just doesn't go away until you are so terribly tired you just wipe out and

sleep. I am sorry. I probably have some of the similar experiences and

symptoms that you have, I take MTX (Injected),plaquenil, celbrex & Prednisone.

I was

scared of the MTX, at first, especially when I started the pills and they

made me so terrible sick. The injections are much easier to take. My Rheumy,

from Stanford University Med Center, said that when he saw me last year he did

not think I would be walking at this time this year. The meds worked (sill

have flares & pain, etc) I am still working. My monthly blood work is all good.

My Rheumy says there are some people who just need to take the

MTx,Plaquenil/Prednisone mixture and it works really well! He gives me a the

Prednisone in

5mg & 1 mg doses....depending upon how I am doing I can build up to 10 mg per

day or when better down to 4 mg per day. I am currently at 6 mg per day. He

said that the dosage of under 10 mgs is considered low and many people take

that for a long livetime. I asked him if he would take it if HE were in my

shoes, and after some thought on his part he said YES. He lectures throughout

the

world and is up on all the latest developments, I have access to E-mail him

where ever he is if I need something my Internist cannot handle, so I do trust

him.

If you want to talke more, you can contact me direct : Dandcmayer@....

Take Care,

Carol m.

[Ed. Note: That sounds like a great rheumy Carol. Could you send me his name and

contact information so I can put him the " Recommended Doctors " list please? Ron]

July 4, 2003

Subject: MTX vs. Prednisone, long term.

Carol, it's funny about prednisone. When I was first rxd methotrexate, it was

because it is considered a " steroid sparing " drug - in other words, the hope is

that the MTX can get you off the MORE dangerous steroids (prednisone). We all

know the long term downsides of prednisone - the worst being osteoporosis,

hypertension and diabetes, I guess. So even though MTX has the scary liver side

effect, which is rare, it is still considered a better long term option than

prednisone.

I never got to try MTX but am now hoping to get onto Enbrel if I can.

But the interesting thing about it is that in the last year I have read two

conflicting reports about long term steroid use - low dose, that is. One report

I read said that long term use of 10 mg or less did NOT result in osteoporosis

or any increase in other problems for most people. So it would seem that taking

10 mg or less per day is not dangerous long term. But then I read another

report that said that people who use inhaled steroids for asthma DO suffer loss

of bone density. I have taken both prednisone (in doses usually less than 10 mg

per day) and inhaled steroids daily for the last 3 years. I have had two bone

density tests which were both " normal " - I am 48 years old and have not gone

through menopause yet, so that may be why. But in general I am at high risk for

osteoporosis; both grandmothers had it very badly, and I am petite, fair, blue

eyed and irish.

Inhaled steroids deliver doses in micrograms, most of which is not absorbed. So

why is it that long term use of inhaled steroids can be worse for your bones

than long term use of 10 mg or less of prednisone?

I live in the bay area and am always interested in hearing about great

rheumatologists. Let me know the name of yours.

Thanks,

claire

Re: [ ] (unknown)

,

It is a bad hand day for me, but I just had to write and tell you my heart

goes out to you! There is nothing harder to deal with than unresolved pain

that

just doesn't go away until you are so terribly tired you just wipe out and

sleep. I am sorry. I probably have some of the similar experiences and

symptoms that you have, I take MTX (Injected),plaquenil, celbrex & Prednisone.

I was

scared of the MTX, at first, especially when I started the pills and they

made me so terrible sick. The injections are much easier to take. My Rheumy,

from Stanford University Med Center, said that when he saw me last year he did

not think I would be walking at this time this year. The meds worked (sill

have flares & pain, etc) I am still working. My monthly blood work is all

good.

My Rheumy says there are some people who just need to take the

MTx,Plaquenil/Prednisone mixture and it works really well! He gives me a the

Prednisone in

5mg & 1 mg doses....depending upon how I am doing I can build up to 10 mg per

day or when better down to 4 mg per day. I am currently at 6 mg per day. He

said that the dosage of under 10 mgs is considered low and many people take

that for a long livetime. I asked him if he would take it if HE were in my

shoes, and after some thought on his part he said YES. He lectures throughout

the

world and is up on all the latest developments, I have access to E-mail him

where ever he is if I need something my Internist cannot handle, so I do trust

him.

If you want to talke more, you can contact me direct : Dandcmayer@....

Take Care,

Carol m.

[Ed. Note: That sounds like a great rheumy Carol. Could you send me his name

and contact information so I can put him the " Recommended Doctors " list please?

Ron]

July 4, 2003

In a message dated 7/4/2003 2:52:45 PM Eastern Daylight Time,

missionblondie@... writes:

> I've gone on long enough (oh it was soooo good to get it out).

>

> Scared but hopeful in Vancouver....

>

Hi ,

I'm glad you found us. I think it is a good idea to start the methotrexate.

I have been on Enbrel with not much luck. I am going to see if my rheumy

wants me to start mtx as well or something else.

Also stress can pay an important part in antagonizing the PA. I first

started having joint pain about 23 years ago right after the birth of my first

daughter. I was also married at the time to an alcoholic and I chose to leave

which I felt much better for a while after that. I am now remarried and it will

be 19 years in August. Try and do what is best for you. sometimes it is

hard!!!!!

Janet

July 5, 2003

Dear --

I'm so glad you found this group and that you are starting MTX. It did a lot of

good for me when I was first diagnosed. I didn't like the side effects but it

really helped control inflammation (which helps with pain) and prevented joint

damage.

You have a lot to deal with and I hope you take it in small bites if you can. I

find that this disease gets the most attention in my life these days and

anything or anybody who can't adapt to that just has to get out of the way

because I only have a certain amount of energy and I have to choose how to use

it. I have very supportive friends, coworkers and family which makes things

easier but even with that I see the fear & disappointment in my family's eyes

when I can't do the things I could do in the past. It makes me very sad.

My very best wishes to you. Stay as strong as you can and I have faith that you

will find a way to live with all this.

I live relatively near you in southeastern Washington and love your part of the

world.

Cheri

July 5, 2003

,

It is a very bad day for my hands, please excuse the spelling. What city do

you live in? I live in Stockton, CA, probably 1-2 hours from the bay area. I

am 55 years old, I have taken inhaled steroids for over 15 years, and medrol

packs for Asthma off and on the same length of time or longer. I see Dr.

Utz, at Standford Medical Cener in Palo Alto. He told me on my last visit

that prednisone under 10mg is being shown not to have the long term side affects

that higher dosages have. He started me on 10 mg to get me thru until the MTX

took affect (6 months). I do not have any of the changes that are associated

with prednisone, and have even lost weight on it, (after about 6 months). I

have been on this dosage for about 2 years. I am blue eyed, red haired and

almost have blue skin I am so fair. I am starting some unusual bruising, but

the Dr. is attributing it to the Plaquenil I take.

It sure helps me. When my daughter got married, and I was under severe

stress, i went back up to the 10 mgs of prednisone for the week before and

tapered

down after it was all over, I breezed thru the festivities and didn't miss a

thing. It comes down to the quality of life in the choices you have to make

with this battle.

Write direct if you would like to Dandcmayer@....

Gentle Hugs,

Carol m.

July 5, 2003

, do the " low " doses cause 'steriod weight gain'...that's what I hate

about it other than it often leads to rebound miniflares when I get off of it...

Sylvia

July 5, 2003

Well, I managed not to gain weight in 2.5 years on low doses around 10 mg, but

it wasn't easy. It does stimulate your appetite.

claire

Re: [ ] (unknown)

, do the " low " doses cause 'steriod weight gain'...that's what I hate

about it other than it often leads to rebound miniflares when I get off of it...

Sylvia

July 15, 2003

In a message dated 7/15/2003 10:30:26 AM Eastern Daylight Time,

healthymomof2@... writes:

> We are now in our process of doing all the post stuff, and getting

> everything set up for the ivig, after reading about that and really praying, i

think

> that i need to get a second opiniion before starting that treatment so that

> is where Dr. Rebekkah buckley comes in. I will keep an update on what she says

> if anyone wants to know. Not to sure about blood work stuff cause they didnt

> tell me indepth that stuff. But from what i have been hearing i need for the

> to tell me in depth stuff. I will quit rambling on, thanks for listening

> everyone.

>

Brandee,

IVIG has been a literal life saver for my son. No more pneumonia's, no more

life threatening infections, and a lot less sickness in general. Kody still

gets sick a lot, more than we would like, but definitely not like before.

Occasionally they talk about taking him off it for a while for retesting, but

that

scares me to death, he gets sick on it for heaven's sake, I don't want to go

back to the way things were EVER!!! So far we've held off and at this point it

is agreed that obviously he needs it so what is the point of further testing.

My point is, yes, IVIG is scary, and it is a huge commitment, we've had to go

every 3 weeks now for 3 years, but it is really worth it. I do think that the

proper first step is a maintenance dose of antibiotics daily, but if that

doesn't work, then IVIG is worth a try!!! I think also that getting a second

opinion is important, but also important is going with your gut feeling. You

are

off to a great start for your son, my son was also 4 years old when he was

diagnosed.

Diane, Mom to Kody age 7, Di Syndrome, Hypogammaglobulinemia, epilepsy,

asthma, chronic encopresis, severe learning disabilities also Mom to Arika

age 15, Kaila age 12, and Sami age 9 (dyslexic). Check out my website at:

<A HREF= " http://www.geocities.com/schmidtzoo/SNAK " >Special Needs Awesome

Kids</A> (www.geocities.com/schmidtzoo/SNAK.html)

July 15, 2003

wow! 20 sessions before any results? I'm not familiar with the

norm etc. but being that some insurance wouldn't cover that, how

much is it per session, typically? Just curious.

Sincerely,

Roxanne

________________________________________________

Get your own " 800 " number

Voicemail, fax, email, and a lot more

http://www.ureach.com/reg/tag

-

> <html><body>

>

> <tt>

> Hi,

>

> A friend of mine has just finished the second round of

Neurofeedback

> (now at 40 sessions) and she is saying really good things. She

said

> the first 20 sessions did not compare to these last 20--so

much more

> of a response. I confirmed this with a therapist we share. His

> language is becoming more natural and he has been very

conversational

> with a lot of deductive reasoning.

>

> I would also like to look into a home version--I remember

e-mailing

> with someone about this. This 5 yr old does it with a

psychologist--I

> believe he only does the initial evals and such and someone

else sits

> at the computer with him and watchs the EEG while he plays the

games.

> I think he may evaluate the readings of the EEG since he told

her his

> beta waves were slow. It seems that it is not very complicated

to do.

> I certainly don't mind going to an office for this BUT they do

say it

> fades and it is harder to do when school is in session. I did

a

> search a while back and came up with " biofeedback " . I received

a demo

> CD on " Play Attention " but is really for older kids and better

with

> ADHD--per the company rep. It has a helmet to read what the

> kids " waves " are doing to help determine the screen

action---but it

> sounds somewhat different than neurofeeback.

>

> Any experience or thoughts on neurofeedback?

>

> Theresa

>

> </tt>

>

>

>

>

>

> <table border=0 cellspacing=0 cellpadding=2>

> <tr bgcolor=#FFFFCC>

> <td align=center>

Groups Sponsor</td>

> </tr>

> <tr bgcolor=#FFFFFF>

> <td align=center width=470><table border=0 cellpadding=0

cellspacing=0> <tr> <td align=center><font

> face=arial size=-2>ADVERTISEMENT <a

>

href= " http://rd./M=194081.3551198.4824677.1261774/D=egroupweb/S=1705061\

616:HM/A=1663535/R=0/SIG=11ps6rfef/*http://www.ediets.com/start.cfm?code=30504 & m\

edia=atkins "

> alt= " " ><img

src= " http://us.a1.yimg.com/us.yimg.com/a/ed/ediets/stat_300x250_atkinsnewsvii.gi\

f "

> alt= " click here " width= " 300 " height= " 250 "

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src= " http://us.adserver./l?M=194081.3551198.4824677.1261774/D=egroupmai\

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> </table>

>

>

>

>

> <tt>

> Unlocking Autism

> www.UnlockingAutism.org

>

> Autism-Awareness-Action

> Worldwide internet group for parents who have a

> child with AUTISM.

>

> Schafer Autism Report

> News and information on Autism

> To Subscribe <a

>

href= " http://home.sprynet.com/~schafer/index.html " >http://home.sprynet.com/~scha\

fer/index.html</a>

> Healing Autism: No Finer Cause on the Planet

>

> </tt>

>

>

>

> <tt>

July 15, 2003

wow! 20 sessions before any results? I'm not familiar with the

norm etc. but being that some insurance wouldn't cover that, how

much is it per session, typically? Just curious.

Sincerely,

Roxanne

________________________________________________

Get your own " 800 " number

Voicemail, fax, email, and a lot more

http://www.ureach.com/reg/tag

-

> <html><body>

>

> <tt>

> Hi,

>

> A friend of mine has just finished the second round of

Neurofeedback

> (now at 40 sessions) and she is saying really good things. She

said

> the first 20 sessions did not compare to these last 20--so

much more

> of a response. I confirmed this with a therapist we share. His

> language is becoming more natural and he has been very

conversational

> with a lot of deductive reasoning.

>

> I would also like to look into a home version--I remember

e-mailing

> with someone about this. This 5 yr old does it with a

psychologist--I

> believe he only does the initial evals and such and someone

else sits

> at the computer with him and watchs the EEG while he plays the

games.

> I think he may evaluate the readings of the EEG since he told

her his

> beta waves were slow. It seems that it is not very complicated

to do.

> I certainly don't mind going to an office for this BUT they do

say it

> fades and it is harder to do when school is in session. I did

a

> search a while back and came up with " biofeedback " . I received

a demo

> CD on " Play Attention " but is really for older kids and better

with

> ADHD--per the company rep. It has a helmet to read what the

> kids " waves " are doing to help determine the screen

action---but it

> sounds somewhat different than neurofeeback.

>

> Any experience or thoughts on neurofeedback?

>

> Theresa

>

> </tt>

>

>

>

>

>

> <table border=0 cellspacing=0 cellpadding=2>

> <tr bgcolor=#FFFFCC>

> <td align=center>

Groups Sponsor</td>

> </tr>

> <tr bgcolor=#FFFFFF>

> <td align=center width=470><table border=0 cellpadding=0

cellspacing=0> <tr> <td align=center><font

> face=arial size=-2>ADVERTISEMENT <a

>

href= " http://rd./M=194081.3551198.4824677.1261774/D=egroupweb/S=1705061\

616:HM/A=1663535/R=0/SIG=11ps6rfef/*http://www.ediets.com/start.cfm?code=30504 & m\

edia=atkins "

> alt= " " ><img

src= " http://us.a1.yimg.com/us.yimg.com/a/ed/ediets/stat_300x250_atkinsnewsvii.gi\

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> alt= " click here " width= " 300 " height= " 250 "

border= " 0 " ></a></td></tr></table> </td>

> </tr>

> <tr><td><img alt= " " width=1 height=1

>

src= " http://us.adserver./l?M=194081.3551198.4824677.1261774/D=egroupmai\

l/S=:HM/A=1663535/rand=148646044 " ></td></tr>

> </table>

>

>

>

>

> <tt>

> Unlocking Autism

> www.UnlockingAutism.org

>

> Autism-Awareness-Action

> Worldwide internet group for parents who have a

> child with AUTISM.

>

> Schafer Autism Report

> News and information on Autism

> To Subscribe <a

>

href= " http://home.sprynet.com/~schafer/index.html " >http://home.sprynet.com/~scha\

fer/index.html</a>

> Healing Autism: No Finer Cause on the Planet

>

> </tt>

>

>

>

> <tt>

July 17, 2003

Liz: I understand the difficulty you are having accepting this disease. I am 37

and also was diagnosed in the earlier part of this year. I don't have small

children, so I can only imagine the challenges in your life. I have not totally

accepted all the changes this brings in my life either. It seems at times that

all four walls are closing in. I do alot of reading and have learned to hope for

the best. I learn alot from this group, and reading their e-mails, reminds me

that I am not alone in the battle. This has been a devastating thing for me as I

to was independent and working less than 8 months ago, but in extreme pain and

still am most of the time. I just try to tell myself that I need to enjoy the

small things that I can do, as much as I use to enjoy the big things...I hope

you will stay with the group, write anytime your down, I will be glad to

listen...sometimes others strength can get you thru......Sheri D

ekay2001 <Ekay2001@...> wrote:Hello all...well here goes my story I am 24

years old and I was

recently diagonosed in February of this year with having RA. I am

married with 2 young girls (ages 5 and 2) And I can't even begin to

explain the difficult times I am having with this and coming to

realization that I have this disease. Each and everyday becomes more

and more difficult to attend to my family, work, and even being a

wife (all 3 being full time). I was on the medication called

diclofenac (or Voltarn) which helped me greatly in the beginning,

until I started getting horrible stomach pains and it no longer

worked for me. I just started taking Mobic, and it has helped

somewhat with my pain, but still that morning stiffness is there,

making it quiet difficult to deal with my morning usual activities.

I would greatly appreciate any advice to help ease this pain. Any

advice on how to deal with stress, family, or just any advice, I need

help, this disease has depressed me in such a way, thanks for all the

support Liz.

July 17, 2003

I tried it too and it didn't work for me...why>

(unknown)

What I did...I'm not sure if this is right...but it worked for me. I

clicked on LEAVE THIS GROUP. I then clicked on JOIN THIS GROUP &

edited my profile. I had tried to edit my profile before LEAVE THIS

GROUP, but that didn't change anything for me. Good luck, sonia

> can someone tell me where I can change my name from coming up on

here(my full name). I just cant seem to find where I can change that.

chris

>

July 17, 2003

Sheri, thank God I found this support group, I just didn't know where else to

turn. I now don't feel alone and I feel so welcomed, has also given me

some great advice and well as others. My family is somewhat supportive, but

they truly don't understand why this has happened or why its happening to me,

and at such a young age. My husband, I know he tries, but he gets frustrated as

well, since dealing with two kids is not easy. There's times when I can't even

turn my door knob or turn my car on, so imagine having to tend to my girls. I

am still in denial, and keep telling myself WHAT IS GOING ON!!!! WHY!!!! I pray

that God just gives me enough strength to at least be there for my girls. My 5

year old, sees and understands a lot, she's always asking me " mommy are you

okay, are you in pain again? " How do I explain these types of things to her,

its so hard! I feel like everything is just caving in on me. It becomes

emotional for me at times. Before my diagnosis, I was very

strong, independent, focused a do it all women. But since this has happened, I

feel so weak and helpless, and sometimes even useless. I think that I am

letting this get the best of me, so I am trying to do whatever I can to get my

normal life back. I will continue to join this support group as long as my

fingers allow and even when they fail, I will have someone type for me. I need

support like this, its the only way to stay positive. Sheri, THANKS!!! I look

forward to your response, Liz.

sheri duke <sheriduke@...> wrote: