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,

vent all you want. emothions is also a part of this process. I get

down sometimes too. I do not thin it a pity party, but it is just part

of being human with a deadly disease. It is ijportant for me to also

take care of my spirit too it helps cope with the illess btter.

love

denise

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Hi , L. here. Yes, prednisone can cause you to have a red face

and neck. I don't remember how long you have been on the metho, but I know

it does take a while to get into your system and start to make a difference.

With me, it took about three months and they had to make adjustments on the

dosage. They may need to increase yours -- are you having flares as well?

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Yes . It seems every time I start to decrease my pred I go into a flare.

I only had flares with my ears before, but not it's going to my nose and

ribs. I am also having problems with my inner ears. How much meth are you

taking. Have I asked you that already? My memory was the first to go.lol

How have you been feeling ?

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In a message dated 3/22/00 11:43:23 AM Eastern Standard Time,

RCColloran@... writes:

<< Is the metho working? Does it

take a long time to get into system? Is there a better drug? Would >>

Hi,

When I went on meth the doctors told me that it takes about 5 weeks to get in

the system. I don't know if their are better drugs, I believe that the meth

had really helped me. It has taken away some of the symptoms but I had to go

up to 80 mg of pred for a while but I think that mine has become chronic.

I'm reducing my pred now. I had

a few months in the last year that I was able to get off of the pred. Im

hoping that Dr. T has something I can add to keep the pred down.

Hope your pred increase in short and sweet. I hate that shit

Donna

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,

I was on Metho and it didn't sit well in my stomach

was going to go to the injections but dr. changed me

to Arava. This seems to be working good, in fact I've

been able to cut down the pred. & colcachine (sp?)

taking it!

Good luck to you

Nancie

--- RCColloran@... wrote:

> From Cc

>

> I've had to up my pred again to 25mg. I've been

> waking up with a red

> face. Kind of like a rash. Is this a side effect

> of pred? Since being on

> methotrexate, I've upped my pred many times. Is the

> metho working? Does it

> take a long time to get into system? Is there a

> better drug? Would

> appreciate any info I can get. Sorry to say I don't

> have the most wonderful

> drs. Don't give me too much info, don't think they

> really know.

>

=====

" A real friend is one who walks in when the rest of the world walks out. "

__________________________________________________

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  • 3 weeks later...
Guest guest

In a message dated 04/10/2000 2:11:31 PM Eastern Daylight Time,

RCColloran@... writes:

<< have been getting hoarse alot and coughing more than usual. How do you

know if you have trach problems or just allergies or something else? I'm

beginning to panic thinking it's RP but don't want to over react if it is

nothing. Can some of you tell me how you're trach problems started and what

to watch for. I'm short of breath, but have been for awhile do to my heart

valve problems.

Any input would be greatly appreciated. As you know my drs aren't up on RP

and any info I can take to them would be helpful. Thanks

C >>

again I am sorry for the delay in this response but The symptoms you

described could be metho related but after a while my symptoms left

completely. I take it every Sat and have no problems at all so don't know if

they would reoccur. sorry can't be of more help there

as for the breathing and caughing

EVERYONE

if you experience any problems like this trouble breathing hoarseness

caughing shortness of breath make an appt for the doctor. PLEASE don't play

around with the trachea problems we could have. It may be nothing or it may

be the start of major problems so a doctor needs to be called in to evaluate

it and demand a CT scan it is your throat that your dealing with, your

ability to breath so take no chances if in doubt check it out!!!!

love, hugs and hope

Angie

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Hi ,

Kathleen here. I've only been on Methotrexate for 5 weeks, but I have to tell

you, I ALWAYS have a horrible headache for 2-4 days after my Tuesday

treatments. In the research I have done, it is one of the many side effects

of the drugs. I can handle the headaches, it's the fatigue that gets me. I

have RP affecting my ears, so I can't help you with your other questions.

Just me, Kathleen

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  • 2 weeks later...
Guest guest

In a message dated 04/25/2000 8:51:07 PM Eastern Daylight Time, AngieCATW1

writes:

<< Subj: (no subject)

Date: 04/25/2000 8:51:07 PM Eastern Daylight Time

From: <A HREF= " mailto:AngieCATW1 " >AngieCATW1</A>

To: <A HREF= " mailto:AngieCATW1 " >AngieCATW1</A>

Dear Dixie

Below are the email addresses of the two doctors I told you about. please

stay in touch with me and let me know what your findings come up with. We are

forming a foundation for RP and any and all information we get is useful

dtrentha@....

jbuckner@...

Jbuckner@...

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow may not come. Lord, help me today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

>>

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow may not come. Lord, help me today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

Dear Dixie

Below are the email addresses of the two doctors I told you about. please

stay in touch with me and let me know what your findings come up with. We are

forming a foundation for RP and any and all information we get is useful

dtrentha@....

jbuckner@...

Jbuckner@...

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow may not come. Lord, help me today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

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  • 2 weeks later...
Guest guest

,

First of all you will get hoarse,but then you will be hoarse and start

sounding like your underwater when you talk. If it gets really severe you

would have to start sleeping in a recliner or other chair propped up almost

so your back is straight, i have some destruction of the trachea already and

have been lucky enough to contract pnuemonia so i too am panicking with the

breating problems.also when i first had problems i used to get the hiccups a

real lot

LOL

Colna

(no subject)

> C here. Hope everyone is feeling on the up side today. I have a

> couple of questions, and hope to get some input from anyone who can help.

> 1) I have been on meth since Jan and had trouble in the beginning but none

> for the last 6 weeks. I am on 15mg weekly.(orally) I take it on Sunday

> nite. This morning I woke up nauseated and with a terrible headache.

Very

> fatigued and flu like symptoms. Is this a natural response after being on

it

> awhile or just a quirk.

> 2) I have been getting hoarse alot and coughing more than usual. How do

you

> know if you have trach problems or just allergies or something else? I'm

> beginning to panic thinking it's RP but don't want to over react if it is

> nothing. Can some of you tell me how you're trach problems started and

what

> to watch for. I'm short of breath, but have been for awhile do to my

heart

> valve problems.

> Any input would be greatly appreciated. As you know my drs aren't up on

RP

> and any info I can take to them would be helpful. Thanks

>

> C

>

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

> @Backup- Protect and Access your data any time, any where on the net.

> Try @Backup FREE and recieve 300 points from mypoints.com Install now:

> http://click./1/2345/1/_/32049/_/955390041/

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

>

> hi and welcome. maybe we can come up with answers that our doctors can't

>

>

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,

look at the side effects from that drug breathing problems,sore rib cage,and

you probably sound kind of like your under water. 20 mg is the max oral

dosage and maybe that is your problem you may want to consider the

injectable metho much much less side effects you get it once a week. they

can train you or someone else in the family to give the shot or you can goto

to dr's office.the shot are intramuscular flank,butt,or arm not bad 22 gauge

needle the bigger the number the smaller the needle 1 1/2 long

LOL

Colna

(no subject)

> C here. Hope everyone is feeling on the up side today. I have a

> couple of questions, and hope to get some input from anyone who can help.

> 1) I have been on meth since Jan and had trouble in the beginning but none

> for the last 6 weeks. I am on 15mg weekly.(orally) I take it on Sunday

> nite. This morning I woke up nauseated and with a terrible headache.

Very

> fatigued and flu like symptoms. Is this a natural response after being on

it

> awhile or just a quirk.

> 2) I have been getting hoarse alot and coughing more than usual. How do

you

> know if you have trach problems or just allergies or something else? I'm

> beginning to panic thinking it's RP but don't want to over react if it is

> nothing. Can some of you tell me how you're trach problems started and

what

> to watch for. I'm short of breath, but have been for awhile do to my

heart

> valve problems.

> Any input would be greatly appreciated. As you know my drs aren't up on

RP

> and any info I can take to them would be helpful. Thanks

>

> C

>

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

> @Backup- Protect and Access your data any time, any where on the net.

> Try @Backup FREE and recieve 300 points from mypoints.com Install now:

> http://click./1/2345/1/_/32049/_/955390041/

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

>

> hi and welcome. maybe we can come up with answers that our doctors can't

>

>

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Thanks for the reply. I am hoarse most of the time, well I'd say 60%.

They say mine is from acid reflux. I use to sleep in recliner because of

pain from fibromyalgia, too painful to sleep in bed. Now I'm not sure it

wasn't RP. Hope you get to feeling better real soon.

C

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's and ,

Brett too is experience a horse voice...he attributes it to the very bad

allergy season in the northeast. I told him that he should keep an eye on

it. Brett has not mentioned having chest pains though. He was flaring so

badly last week that I phoned the Dr. A 'fill in' doc told him to take 20

mg in the morning and 20 at night for two days, then 20 in the morning and

10 at night for two days to try to get it under control again. It is

working a bit.

B.

At 11:20 PM 5/7/2000 EDT, you wrote:

>Thanks for the reply. I am hoarse most of the time, well I'd say 60%.

>They say mine is from acid reflux. I use to sleep in recliner because of

>pain from fibromyalgia, too painful to sleep in bed. Now I'm not sure it

>wasn't RP. Hope you get to feeling better real soon.

>

> C

>

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

>@Backup- Protect and Access your data any time, any where on the net.

>Try @Backup FREE and recieve 300 points from mypoints.com Install now:

>http://click./1/2345/1/_/32049/_/957756005/

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

>

>hi and welcome. maybe we can come up with answers that our doctors can't

>

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Guest guest

, I'm on 15mg of meth a week. Have seriously considered injections. I

have no problem giving them myself. Use to give injections to my mom. Just

took my dose of meth last night and you can guess how I feel today. Will ask

rheummy next visit about inject.

Thanks

C

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Guest guest

, Hope Brett is feeling better this week. I asked my ENT if my

hoarsness could be allergies and he said no, not with the dose of pred I was

on. He felt it was acid reflux. Who knows. Hope the increase in Brett's

meds helps.

C

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Guest guest

Hi Folks,

Lucy here, sorta buttin, I had the horseness, shortness of breath, bad cough,

etc, and my Dr. (ENT) gave me some samples of ACIPHEX. Took it for two weeks

and got him to give me a prescription. I have noticed a big difference in all

areas. Still have the shortness of breath but my Adult Pulmonary Function test

showed that I have a problem with exhaling, leaving some air in a pocket or

something. At any rate, the hoarseness is really about gone, and very little

coughing. So, there must be something to that particular kind of reflux (GERD)

and it causing some of the problems I was getting ready to blame on RP. (Why

not, it does everything else to our bodies!) For what it is worth, ask your

Doc's for a sample to see if it works for you as well as it has for me. Only

one pill a day. Love and Prayers, Lucy

RCColloran@... wrote:

> , Hope Brett is feeling better this week. I asked my ENT if my

> hoarsness could be allergies and he said no, not with the dose of pred I was

> on. He felt it was acid reflux. Who knows. Hope the increase in Brett's

> meds helps.

>

> C

>

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

> Bids starting at $7 for thousands of products - uBid.com

> http://click./1/3027/1/_/32049/_/957808004/

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

>

> hi and welcome. maybe we can come up with answers that our doctors can't

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Fw: (no subject)

>

>> > > > THE BEST THINGS IN LIFE

>> > > > > > > > >

>> > > > > > > > > Falling in love.

>> > > > > > > > >

>> > > > > > > > > Laughing so hard your face hurts.

>> > > > > > > > >

>> > > > > > > > > A hot shower.

>> > > > > > > > >

>> > > > > > > > > No lines at the Super Walmart.

>> > > > > > > > >

>> > > > > > > > > A special glance.

>> > > > > > > > >

>> > > > > > > > > Getting mail.

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>> > > > > > > > > Taking a drive on a scenic road.

>> > > > > > > > >

>> > > > > > > > > Hearing your favorite song on the radio.

>> > > > > > > > >

>> > > > > > > > > Lying in bed listening to the rain outside.

>> > > > > > > > >

>> > > > > > > > > Hot towels out of the dryer.

>> > > > > > > > >

>> > > > > > > > > Finding the sweater you want is on sale for half

>> > > > > > > > > price.

>> > > > > > > > >

>> > > > > > > > > Chocolate milk shake.

>> > > > > > > > >

>> > > > > > > > > A long distance phone call.

>> > > > > > > > >

>> > > > > > > > > A bubble bath

>> > > > > > > > >

>> > > > > > > > > Giggling.

>> > > > > > > > >

>> > > > > > > > > A good conversation.

>> > > > > > > > >

>> > > > > > > > > The beach.

>> > > > > > > > >

>> > > > > > > > > Finding a $20 bill in your coat from last winter.

>> > > > > > > > >

>> > > > > > > > > Laughing at yourself.

>> > > > > > > > >

>> > > > > > > > > Midnight phone calls that last for hours.

>> > > > > > > > >

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>> > > > > > > > >

>> > > > > > > > > Laughing for absolutely no reason at all.

>> > > > > > > > >

>> > > > > > > > > Having someone tell you that you're beautiful.

>> > > > > > > > >

>> > > > > > > > > Laughing at an inside joke.

>> > > > > > > > >

>> > > > > > > > > Friends.

>> > > > > > > > >

>> > > > > > > > > Falling in love for the first time.

>> > > > > > > > >

>> > > > > > > > > Accidentally overhearing someone say something nice

>> > > > > > > > > about you.

>> > > > > > > > >

>> > > > > > > > > Waking up and realizing you still have a few hours

>> > > > > > > > > left

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>> > > > > > > > >

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>> > > > > > > > >

>> > > > > > > > > Playing with a puppy.

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>> > > > > > > > > Late night talks with your roommate

>> > > > > > > > >

>> > > > > > > > > Having someone play with your hair.

>> > > > > > > > >

>> > > > > > > > > Sweet dreams.

>> > > > > > > > >

>> > > > > > > > > Hot chocolate.

>> > > > > > > > >

>> > > > > > > > > Road trips with friends.

>> > > > > > > > >

>> > > > > > > > >

>> > > > > > > > > Swinging on swings.

>> > > > > > > > >

>> > > > > > > > >

>> > > > > > > > > Watching a good movie cuddled up on a couch with

>> > > > > > > > > someone you love

>> > > > > > > > >

>> > > > > > > > > Wrapping presents under the Christmas tree

>> > > > > > > > > while eating cookies and drinking eggnog.

>> > > > > > > > >

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>> > > > > > > > > can sing along without feeling stupid.

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>> > > > > > > > > open a much-desired present from you.

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>> > > > > > > > > God for another beautiful day.

>> > > > > > > > >

>> > > > > > > > >

>> >

>>

>

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  • 3 weeks later...
Guest guest

I received this post from Jana yesterday. I wrote her back and she gave me

permission to post to the group. Thought maybe some of you could give her

answers I can't . Thanks everyone.

Love

C

-

My name is Jana Hodge. My mother-in-law spoke to you a little bit about my

situation. I was wondering if I could ask you some questions about this

disease? I hope I am not too much trouble. I live in a small town in

western Oklahoma called Sayre. My address is 119 Central Drive, Sayre, OK

73662 and my phone number is . I think this support group is

just what the Lord thought I needed. My sister, who lives in Alabama, came

across this site purely by accident. I am truly grateful, because I thought

I was all alone. I felt kind of silly, although I was in sever pain, going

to the emergency room for the top of my ears being swollen, red and on fire,

is how I explained it. At the same time my eyes were blood red. There was

no white part in my eyes it was all red. I see that the ears are common

among most with RP. I had three episodes always the eyes and ears

together.(Feb, Mar, Apr) Towards the end of April, on a Sunday, I woke up in

severe pain in my knees, hips and ankles. I was unable to walk, sit, or

sleep. I started to get knots that were red, swollen, and hot to touch. I

had one just below my right knee and one on my right shin a few inches above

my ankle. Has anyone else had these? The pain got so much worse by the end

of Easter weekend and my ankles and right foot were swollen as if I had

sprang both my ankles. At the same time I had the redness in my eyes, my

wrist were getting a little sore and the right side of my nose also. My

husband called the doctor and he put me on 40 mg. of prednisone, did some

blood work, and tried to make me a doctor's appt. with a Rheumatologist, but

I got in faster by seeing my moms doctor at McBride, Bone and Joint in OKC.

He discussed the possibly of it being RP, because I was able to walk, my eyes

were just a little red, and my knots had gone down.(they look like small

bruises with a little knot), and my ears were just a little red and swollen

all due to taking the prednisone. He reduced me to 30 mg. and that same day

my left ear and eyes started to get red and swell. He told me to continue on

it and he ordered a biopsy of both my ears with my ENT who had already done

one previously in the ER, he tested the first one for cancer, which came up

negative. The second one was done a week later when my ears were not

inflamed. Does this make a difference? He is sending me to another doctor

who specializes or has a few cases of RP in the eyes. I will see him May

30th. I just don't know what to expect or how to feel. I have 2 young

children McKenzie (Mac) 6 yrs. and Britton (Britt) 4yrs. and a wonderful and

caring husband, Dean. I hope I didn't flood you with too much information or

too many questions. I just want to know everything I possibly can. As I

look back now I see I may have had other symptoms that others have had. Back

in November I lost my voice for 1 week, I had no cold or any other symptoms

that causes you to lose your voice, it just wasn''t there at all. Also

during the 1st of December my eyes were red and in pain, but that only lasted

3 days and went away on its own. How long do most stay on the prednisone? I

am starting to get a little down due to weight gain? Is this normal? Last

year about this time my husband and I entered a body transformation challenge

and we both worked out aerobically and we did strength training. We were in

the best shape of our lives. I have already gained 10 pounds with the

prednisone and look like I am 3 mo. pregnant.(although I'm not)) Does this

ever go away? I have already had to buy clothes that were bigger. I read

last night on some of the E-mails of some of the others talking about their

body's. I know I could live with the weight gain, but definitely not the

pain in the ears or joints. I am just so thankful that there is someone else

to talk to that has been there. It makes me feel reassured that there is a

chance of remission or of at least living a normal life as possible. Thanks

again for talking to my mother-in-law. Sometimes I wonder what I would do if

I didn't have her. She is always there for every doctors apt.'s, kids and

for us.

Well, I guess I will let you read my novel of questions. I hope I didn't

spoil your weekend. But I sure am thankful that you are there. I come to my

mother-in-law's house on weekends to read the E-mails and etc, we only have a

small Macintosh that is not Internet ready. We should have one around the

middle of next month.(hopefully)

Thanks Again!!

Jana

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I'm forwardint this post from Jana. I know most of you will have some good

advise for her. Thanks

C

Sorry to bother you again with my many questions, but here I go.

This morning after I had been up for about 1 hour my throat started to

hurt like if you had drainage. Then it started to swell and when I

swallowed it felt like there wasn't much room to go down. I started to

panic, due to fact that RP can strike your trachea. 30 minutes after I took

my 25 mg. of prednisone I started to feel better. I already had an

appointment with my Rhuem. so I just waited until I spoke to him. He did

not say much except maybe I just had a virus. Should I be concerned? What

are the signs and symptoms of the throat? I currently only take 25 mg. of

prednisone. I have a kidney infection that started 3 days ago ( a lot of

pain in my back) so I am now also taking sulfatrim. The Rheum said that he

did not want to put me on the methotrexate until my kidneys cleared up. I

should start the methotrexate Friday, June 9th if all goes well with my

kidneys. He is really vague. I learned more from reading the e-mails of

other RP sufferers and my eye specialist than I have from him and he is the

one who diagnosed it. I would appreciate any help that you or anyone could

give me.

I also have another question about diet. I read a web page on a lady

named who had RP, but has been in remission because a program

called the McDougall Program. You avoid animal protein, dairy products,

eggs, sugar and salt. You eat mostly carbohydrates(veg and fruits, pastas,

breads, and beans) and protein from plants or other sources. Has anyone

tried this before and does it work?? I have been on it for about 2 weeks.,

but this is not what I would regularly eat. It seems like I stay tired all

the time. I don't know if it is the RP, prednisone, diet. Is anyone else

like this?? Heidi said she is full of energy on the pred. and I also read an

e-mail with someone else with alot of energy. Is this just me?? I can wake

up exercise, take a shower and eat breakfast and then I am ready to go back

to bed. We have been doing a lot of driving to the doctors(we live about 2

hours away from the doctors in OKC, OK) and although I don't do the driving,

I am constantly having to take a nap on the way, because I can't keep my eyes

open. I used to eat six small meals containing a protein and a carbohydrate.

This has always worked for me, but I'm not sure what or if any diet change I

should do. I asked my Rheum. and he said he did not know if it would help or

not he has not ever looked at the diet or had anyone discuss diet or

nutrition with him. He didn't seem to think much about it. Any ideas????

I have one more question, but I am not sure you can answer it or not. Heidi

told me of a lady named that lives in OKC, OK. I was just wondering if

you might know the name of the doctor she uses or maybe her e-mail so that I

make ask her. I just feel like I am a bother to the Rheum. that I have it

seems like I leave there with more questions that I went it with. His words

were when I left " I want to see you back in 4 weeks. Good Luck Jana " . He

just kind of makes me feel like I am a bother. Should I be concerned or is

this how they normally act with little or no sense of humor.

I just want to say thanks again for all your help!! This group has truly

been a God send. I know he led me here for a reason. You all are so

wonderful, thoughtful, giving and kind. You offer a lot of help and support

where other can't. I thank God for you everyday. I will keep , Pete,

and Heidi and everyone who is either having a good day or bad day in my

prayers.

Thank Again!!

Jana

It may take me a little time to get back with you. I do not have a computer

yet, but I do come to my in-laws house when we are in the city. Maybe she

can read it to me. I also have a fax in my home it is the same

as my phone number. Lot's of Prayers!!!!

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  • 3 years later...

, congratulations! 100# in 8 months is wonderful. Bet you're feeling

better!?

Joan C , Calif

LAP RNY 11/18/03

(no subject)

Hi All,

I can't believe it 100 lb. in 8 months

A. B.

LAP RNY 3/22/03

Dr. Steve Weinstein, MD.

Mobile, Alabama

BMI 65/48

386/286- 100LBS.

59 years old

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WAY TO GO GIRL. THAT SOUNDS SO GOOD.I HOPE WHEN I HAVE MY SURGERY I DO THAT

GOOD TOO.

STACY IN GALESBURG,ILLINOIS

(no subject)

Hi All,

I can't believe it 100 lb. in 8 months

A. B.

LAP RNY 3/22/03

Dr. Steve Weinstein, MD.

Mobile, Alabama

BMI 65/48

386/286- 100LBS.

59 years old

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... WOW and Congrats ..

You are such a Loser.. :: grin:::

Can't wait to join ya!

Peace,

K

Open RNY Surgery date : 12/2/03

5' and 252 lbs

(no subject)

Hi All,

I can't believe it 100 lb. in 8 months

A. B.

LAP RNY 3/22/03

Dr. Steve Weinstein, MD.

Mobile, Alabama

BMI 65/48

386/286- 100LBS.

59 years old

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Welcome to the century club!!

Pamela

>   Hi All,

> I can't believe it 100 lb. in 8 months

>

>

>

> A. B.

> LAP RNY 3/22/03

> Dr. Steve Weinstein, MD.

> Mobile, Alabama

> BMI 65/48

> 386/286- 100LBS.

> 59 years old

>

>

>

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