Re: (unknown)

February 18, 2001

--- JOstry93@... wrote:

> Sharon, I was dx with " Iritis " before the biopsy

> even came back. I remember

> how very painful it was. It was treated with

> steroid eye drops (sorry I cant

> remember the name of them). The infection lasted

> about 6 or 8 weeks, and

> since I was in a major flare at the time (altho I

> frankly didn't know what a

> flare was), the Opthomologist said it was common

> with RP. I wish I could be

> of more assistance but I suffer from CRS disease as

> well! LOL, Judy O

>

What is CRS disease? Before treatment I was having

chronic " eye infections " according to my PCP at the

time. Very painful! The opthalmologist diagnosed the

keratoconjunctivitis sicca and has had me on

medication every since. I am going to ask him to look

at me with RP in mind when I see him later this month.

Thanks for your information. Sharon

=====

http://www.iwin.com/register.asp?sisterslk (AT) yahoo (DOT) com

__________________________________________________

February 22, 2001

Dawn, you're not the first one this has happened to, I've heard of N-M doing

this a few times. Is the recipe worth it? Also what is " blended oatmeal'??

Take care, I am forwarding the recipe to everyone on my email list. LOL,

Judy O

February 22, 2001

In a message dated 02/21/2001 5:26:26 PM Central Standard Time,

sisterslk@... writes:

<<

>>

Rememberr what?? Careful, it's highly contagious! LOL, Judy O

February 28, 2001

Dawn, that was so nice. Thank you. I love the jokes and send them on to

non-RP friends. I'm glad they come with love, I love you too! LOL, Judy O

February 28, 2001

Excellent questions demanding answers! What the heck is " onomatopoeia " ? and

how is it pronounced? I'll pass these on, maybe someone has some answers -

my husband is strange enough to come up with answers.who knows? I really

like the one " If love is blind,...) Very cute! LOL, Judy O

PSs: You do know I'm kidding when I say maybe I can get some answers, don't

you?

February 28, 2001

Well, my husband, brothers, brothers-in-law, uncles will all appreciate this!

LOL, Judy O

February 28, 2001

judy we all need some answers, dawn

--- JOstry93@... wrote:

> Excellent questions demanding answers! What the

> heck is " onomatopoeia " ? and

> how is it pronounced? I'll pass these on, maybe

> someone has some answers -

> my husband is strange enough to come up with

> answers.who knows? I really

> like the one " If love is blind,...) Very cute!

> LOL, Judy O

>

> PSs: You do know I'm kidding when I say maybe I can

> get some answers, don't

> you?

>

__________________________________________________

March 25, 2001

Good luck we will all be praying for your speedy recovery!!

Renae

Dr Scholten

Grand Rapids Mich

2-27-01

251 lbs

currently

235 at last dr's visit

March 25, 2001

Go get em Glo! Thoughts and prayers will be with you.

--- JC5FANS@... wrote:

> Hi gang

> Tomorrow I will be a packing maniac, lol, so thought

> I'd drop by

> tonight. Early Tuesday morning Dave & I will set out

> for our great

> adventure in NYC. My surgery will be Friday, March

> 30 with Dr.

> Ren at NYU Medical Center.

>

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

>

December 21, 2001

Hi to the fellow Southern California members. I would be happy to help with

transportation for anyone who needs it to get to a support group meeting.

I'm not sure how far Thousand Oaks is, but it seems that I heard it was not

too far from Pasadena, where I am.

Cindy V.

December 22, 2001

My husband has those dramatic fluctuations. His blood pressure is generally

high even with Lisnopril and 80 mg of lasix a day. Even so, he will often

have times when his blood pressure drops into the range of 50's. He is very

weak and lightheaded on these days. Some times this will be 2-3 days in a

row, sometimes, just one day once in a while.

He also has the problem (almost to no mobility) of not being able to move

feet or losing his balance. He says he feels as though his feet/legs weigh

200+ lbs each.

Best wishes to you.

Marilyn in TN

>

> Reply-To: shydrager

> Date: Sat, 22 Dec 2001 07:46:47 -0800 (PST)

> To: Support Group shydrager >

> Subject: (unknown)

>

> Hi All:

>

> Bill has his semi annual visit to Dr. Cote on the

> 28th. He's been keeping a journal with his bp readings

> 3x a day. For the last week and a half, his bp seems

> to be high (145/155/160). Of couse, his standing bp

> drops 30 to 40 points. On two days, it was 90 sitting

> and 65 standing. This latter bp is more like the

> readings he has had for the last three year, with

> lower readings on some hot days.

>

> We just don't understand the higher readings this past

> week. He is on Florinef and Amantadine.

>

> Has anyone experienced this fluctuations? I've noticed

> less mobility and he says sometimes when he is going

> to take a step forward, he can't move his leg. He

> loses his balance and goes backwards.

>

> Aida and Bill

>

> __________________________________________________

>

June 15, 2002

Angie

Welcome...

I've only been a member of this group for less than a month, but even in

that short time I know that whatever it is you need to talk about, this

is the place to get started. The people here don't invent answers or

make things up... they give you the best information they have and if

they don't know the answer will send you to where you can go to get it,

whether that is on the net or in the world.

What is your son's name?

I hope we'll hear more from you about your situation soon, and I know

you'll find much of what you are looking for here.

In the meantime, try reading through the archived messages from the

group members... they are at the site where you signed up for the

group. Just from reading through a few of them, you can get a feel for

the depth of discussion and the experiences of the people here.

Jeanne

vincesboy2002 wrote:

>

> Hi i have a son at the age of 4 the might have rss but i need to talk

> to someeone can someone contact me please.

>

> Angie

>

June 15, 2002

Angie

Welcome...

I've only been a member of this group for less than a month, but even in

that short time I know that whatever it is you need to talk about, this

is the place to get started. The people here don't invent answers or

make things up... they give you the best information they have and if

they don't know the answer will send you to where you can go to get it,

whether that is on the net or in the world.

What is your son's name?

I hope we'll hear more from you about your situation soon, and I know

you'll find much of what you are looking for here.

In the meantime, try reading through the archived messages from the

group members... they are at the site where you signed up for the

group. Just from reading through a few of them, you can get a feel for

the depth of discussion and the experiences of the people here.

Jeanne

vincesboy2002 wrote:

>

> Hi i have a son at the age of 4 the might have rss but i need to talk

> to someeone can someone contact me please.

>

> Angie

>

June 15, 2002

Angie

Welcome...

I've only been a member of this group for less than a month, but even in

that short time I know that whatever it is you need to talk about, this

is the place to get started. The people here don't invent answers or

make things up... they give you the best information they have and if

they don't know the answer will send you to where you can go to get it,

whether that is on the net or in the world.

What is your son's name?

I hope we'll hear more from you about your situation soon, and I know

you'll find much of what you are looking for here.

In the meantime, try reading through the archived messages from the

group members... they are at the site where you signed up for the

group. Just from reading through a few of them, you can get a feel for

the depth of discussion and the experiences of the people here.

Jeanne

vincesboy2002 wrote:

>

> Hi i have a son at the age of 4 the might have rss but i need to talk

> to someeone can someone contact me please.

>

> Angie

>

June 15, 2002

Does he look alot smaller than his peers? What did your pediatrician say? I

have a daughter that may have rss but we are not sure yet. Doc is doing the

wait and see approach which is the reason I just switched doctors. RSS is

apparently hard to diagnose because there is no definite test just alot of

symptoms. Does he have ears that stick out or a triangular face or poor

appetite? Assymetry ? There are alot of things but even if he does not fit all

the traits he could still be RSS. What percentile is he in weight and height?

Marla Eckert

(unknown)

Hi i have a son at the age of 4 the might have rss but i need to talk

to someeone can someone contact me please.

Angie

June 15, 2002

Does he look alot smaller than his peers? What did your pediatrician say? I

have a daughter that may have rss but we are not sure yet. Doc is doing the

wait and see approach which is the reason I just switched doctors. RSS is

apparently hard to diagnose because there is no definite test just alot of

symptoms. Does he have ears that stick out or a triangular face or poor

appetite? Assymetry ? There are alot of things but even if he does not fit all

the traits he could still be RSS. What percentile is he in weight and height?

Marla Eckert

(unknown)

Hi i have a son at the age of 4 the might have rss but i need to talk

to someeone can someone contact me please.

Angie

June 15, 2002

Does he look alot smaller than his peers? What did your pediatrician say? I

have a daughter that may have rss but we are not sure yet. Doc is doing the

wait and see approach which is the reason I just switched doctors. RSS is

apparently hard to diagnose because there is no definite test just alot of

symptoms. Does he have ears that stick out or a triangular face or poor

appetite? Assymetry ? There are alot of things but even if he does not fit all

the traits he could still be RSS. What percentile is he in weight and height?

Marla Eckert

(unknown)

Hi i have a son at the age of 4 the might have rss but i need to talk

to someeone can someone contact me please.

Angie

June 16, 2002

Hi,

I am new to the RSS support group. I am a 25 year old

young woman with RSS. I was diagnosed when I was 2 by

Dr. of s Hopkins. I have read the recent

emails and there seem to be a lot of concerns out

there about your children with RSS. If you have any

questions about how they feel, what later development

will be like, etc., please feel free to ask me. For

the record, RSS is not anything debilitating. Yes, in

early childhood there are a lot of medical problems,

hospital visits, etc. and it can seem overwhelming,

but it does go away with age. I had another friend

who lived in Washington (I live in Texas) who has RSS

and she found it went away as well. Though small, I

was able to participate in cheerleading, volleyball,

gymnastic and a whole array of academic endeavors,

including honor society and I also graduated in the

top 10% of my high school class and am currently in

college pursuing a degree in pediatric clinical

psychology. So, all hope is not lost and all it takes

is a little patience and understanding to get through

the difficult years. However, I do feel strongly

about having RSS children speak with a counselor or

therapist as adolescence nears because not only is

puberty a difficult time, but when you are not like

the other kids, it makes it even more difficult.

Hope this helps!

Sincerely,

Auchter

--- kmerrith kkm@...> wrote:

> Hi Angie,

>

> Welcome to our group.

>

> I am sure we can answer any question you have.

> Please feel

> free to ask just about anything.

>

> I hope we can help.

>

> Ken M

>

> > Hi i have a son at the age of 4 the might have rss

> but i need to

> talk

> > to someeone can someone contact me please.

> >

> > Angie

>

__________________________________________________

June 16, 2002

Dear Jodi,

My son is 4 years old. He does not walk or speak yet. One doctor told us

that he might have rss. I don't know anything about it. He weighs 26lbs. He

is every small.

He is a very happy little boy. is walking aong furniture, pulling to

stand and crawling everywhere. But he does not walk on his own. He

sometimes has seizures which is every scary. He eats every well but does not

put on weight. Will he be alright? He gets OT, physical and speech. He

will soom start school. I am every scared. Will he speech and walk? Is

there real health issues. There is so much i need to know but i can not

think right now. I will ask as a think of them. Please write back. Also is

there anyone ever in the chat room i check everyday and no one is ever there.

Angie

June 16, 2002