New Member

Report post · October 6, 2000

Welcome to the group.

~Esther & Carol~

''To get out of a difficulty, one

usually must go through it.''

" Never look down on anybody

unless you are helping them up. "

----- Original Message -----

From: <swaine.t@...>

< egroups>

Sent: Thursday, October 05, 2000 11:29 PM

Subject: [ ] New Member

> Hello

>

> Just signed up today. Results of a sweeping blood test, where they

> test for everything came back, elevated esr result. So I went

> searching to find out about it, and found this site. Don't know for

> certain if I have RA yet, but I know my knees are a problem. Got to

> go back for retesting etc. I'm 28. Bye for now, only keep this

> brief.

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

Report post · October 6, 2000

Welcome , There are many of us still waiting for a diagnosis

and are re-testing as well. You have come to the right place and the

right people for support, information and an occasional chuckle when

things get you down. Please keep us posted as to your results.

Regards,

Sylvia

> Hello

>

> Just signed up today. Results of a sweeping blood test, where they

> test for everything came back, elevated esr result. So I went

> searching to find out about it, and found this site. Don't know

for

> certain if I have RA yet, but I know my knees are a problem. Got

to

> go back for retesting etc. I'm 28. Bye for now, only keep this

> brief.

>

Report post · October 7, 2000

Welcome, !

Hope you like it here. We are a very smart, compassionate, and funny group.

Together we share excellent information and support.

An accurate diagnosis can take some time, but it is very much worth the wait

and trouble. Sorry you must go through this.

----- Original Message -----

From: " " <swaine.t@...>

< egroups>

Sent: Thursday, October 05, 2000 10:29 PM

Subject: [ ] New Member

> Hello

>

> Just signed up today. Results of a sweeping blood test, where they

> test for everything came back, elevated esr result. So I went

> searching to find out about it, and found this site. Don't know for

> certain if I have RA yet, but I know my knees are a problem. Got to

> go back for retesting etc. I'm 28. Bye for now, only keep this

> brief.

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

Report post · October 7, 2000

Hello

Thanks for that. Not sure what is next, excpet another blood test I assume.

Then who knows. Been surfing to find out any info I can. At this point not

sure how much I am to read into the initial blood test. Although the first

thing the nurse asked as she saw the results on screen was if I had

Arthritis. If it is correct, I'll be glad to start doing something about

it. Might even have painfree horse riding again, but not done much in the

past 2 years, no horses near here just now. anyone know any good links for

a possible new starter? Thanks,

----- Original Message -----

From: Matsumura <Matsumura_Clan@...>

< egroups>

Sent: Saturday, October 07, 2000 12:32 PM

Subject: Re: [ ] New Member

> Welcome, !

>

> Hope you like it here. We are a very smart, compassionate, and funny

group.

> Together we share excellent information and support.

>

> An accurate diagnosis can take some time, but it is very much worth the

wait

> and trouble. Sorry you must go through this.

>

Report post · February 8, 2001

Welcome, Brannie! This is a good group. I have a friend

who is newly diagnosed with lupus - he thinks. You

answered a question I was going to post. Wasn't sure if

RA and lupus could be diagnosed together. Do you have a

postive Rheumatoid factor.

Report post · February 8, 2001

Brannie,this bunch of nice people has a lot of members with multiple

diseases,most of them the same as yours. I only have RA so I'm one of

the lucky ones. So many of us have those days where it hurts to just

walk to the bathroom.I have had total hip replacements (which now have

to be repaired),my wrist has a metal plate in it and I have had both

shoulders replaced. One lung has some scarring from some inflammation

during a flare.

Where do you live? I am in Minnesota and have found lots of help for low

income people. I'm glad to meet you and hope we can help you in any way.

The other Joyce (namu)

Report post · March 13, 2001

welcome!! sounds like you have your hands full like the rest of us!!! i am

41, suffering from inflammatory spondyloarthropy, oa and suffering from some

internal bleeding from the meds and also a new insurance plan this year. have

been home on disability since december, started ss disability papers and

returning to my rheumi on monday for evaluation of whether i should return to

work.

kathy

Report post · March 27, 2001

Welcome Marie, you will love this group. there are some very

knowledgable and caring people here. And most important very

sympathetic. Ask andy questions that you might have, The brains of

this group(you know who you are ) will find the answer.

Good luck,

a R.

> I would like to introduce myself. I'm Marie, age 43, mom to twins

Joe and

> , age 15.

>

> I was diag. with RA last April. I had not been feeling right for a

while

> and finally decided to get a physical. I knew I had a touch of

arthritis in

> my hands because they were stiff every now and then. Needless to

say when

> the test results came back I was a bit overwhelmed.

>

> My ANA test came back positive. I can't remember what my titter

count was,

> but it was in the low range. Based on that test and physical exam

my dr.

> told my I have serum neg. RA. He thinks there may be a mild case

of lupus

> lurking around too. He said we will have to wait a bit for

everything to

> fully declare itself.

>

> I am hoping I'm at the tail end of a nasty flare. These past 10

days of

> been pure hell. Everything aches, very tired, and my mood has been

anything

> but nice. I saw my rheumy last week. He told me to double my Vioxx

and gave

> me Ambien to help me sleep. Still waiting for the effects of either

> medication to work.

>

> Marie

> AKA TwinMom

Report post · March 28, 2001

Welcome, Marie!

Sorry that you haven't been feeling well. I hope your flare ends very soon.

Too bad also that your diagnosis is still fairly uncertain. Don't worry.

That's a common problem with rheumatic diseases. Sometimes it's very hard to

tell in the beginning exactly which disease you have.

Does your physician have a Plan B in case the Vioxx still doesn't work even

after you increase the amount?

Glad you found us. Looking forward to getting to know you.

----- Original Message -----

From: " M. Bowen " <bowens@...>

< >

Sent: Tuesday, March 27, 2001 4:28 PM

Subject: [ ] New Member

> I would like to introduce myself. I'm Marie, age 43, mom to twins Joe

and

> , age 15.

>

> I was diag. with RA last April. I had not been feeling right for a while

> and finally decided to get a physical. I knew I had a touch of arthritis

in

> my hands because they were stiff every now and then. Needless to say when

> the test results came back I was a bit overwhelmed.

>

> My ANA test came back positive. I can't remember what my titter count

was,

> but it was in the low range. Based on that test and physical exam my dr.

> told my I have serum neg. RA. He thinks there may be a mild case of lupus

> lurking around too. He said we will have to wait a bit for everything to

> fully declare itself.

>

> I am hoping I'm at the tail end of a nasty flare. These past 10 days of

> been pure hell. Everything aches, very tired, and my mood has been

anything

> but nice. I saw my rheumy last week. He told me to double my Vioxx and

gave

> me Ambien to help me sleep. Still waiting for the effects of either

> medication to work.

>

> Marie

> AKA TwinMom

>

Report post · March 28, 2001

Welcome Marie. You can join our club of the undiagnosed. We have many

members here that are not certain of their diagnosis, myself included. I

was told I had RA for 20+ years, but recently was told I have psoriatic

arthritis.

I'm 46 and am on Enbrel, mtx, vioxx, vicodan, fosamax and several

supplements.

I hope you feel better soon. Is your doctor planning on giving you DMARD's

such as plaquenil, mtx, gold, or Arava? The Vioxx is just an

anti-inflammatory to control inflammation, but doesn't stop the progression

of the disease. Your doctor may be running more tests to find out what

you have before deciding on treatment. I hope you get answers soon, so

that you can get proper treatment.

A very close friend of mine have twins too, a boy and a girl that just

turned 16. The girl looks just like her mom and the boy is a mirror image

of his dad. They have been a lot of fun over the years and are good friends

to my 2 children.

Glad you found us, but sorry it has to be because of illness.

a

----- Original Message -----

From: " M. Bowen " <bowens@...>

< >

Sent: Tuesday, March 27, 2001 5:36 PM

Subject: [ ] New Member

> I would like to introduce myself. I'm Marie, age 43, mom to twins Joe

and

> , age 15.

>

> I was diag. with RA last April. I had not been feeling right for a while

> and finally decided to get a physical. I knew I had a touch of arthritis

in

> my hands because they were stiff every now and then. Needless to say when

> the test results came back I was a bit overwhelmed.

>

> My ANA test came back positive. I can't remember what my titter count

was,

> but it was in the low range. Based on that test and physical exam my dr.

> told my I have serum neg. RA. He thinks there may be a mild case of lupus

> lurking around too. He said we will have to wait a bit for everything to

> fully declare itself.

>

> I am hoping I'm at the tail end of a nasty flare. These past 10 days of

> been pure hell. Everything aches, very tired, and my mood has been

anything

> but nice. I saw my rheumy last week. He told me to double my Vioxx and

gave

> me Ambien to help me sleep. Still waiting for the effects of either

> medication to work.

>

> Marie

> AKA TwinMom

>

Report post · April 15, 2001

Paige,

Do you know what kind of helmet it is? Is it a helmet or a band? My son

has a Starband and in 4 weeks we have seen much improvement. The doctors

had me reposition him for 3 1/2 months and it didn't get any better. My son

has torticollus also. Make sure you get her into physical therapy, it does

wonders. Also, make sure that they put the fastening strap on the opposite

side of the torticollus. We made that mistake in his first starband and it

made the tort worse. It seems most pediatricians say it will work it self

out. I have not seen or heard of a case yet. And who wants to take that

chance.

Good luck,

Cherie - 's Mom

-----Original Message-----

From: pgoode@... [mailto:pgoode@...]

Sent: Saturday, April 14, 2001 8:37 PM

Plagiocephaly

Subject: New Member

My husband and I noticed that our daughter had a flat spot on her head

within a few months of life. Our pediatrican kept saying it would take care

of itself. She was finally at her 6 mos appt and we brought it up again and

with a second look they diagnosed her with torticollus. They didn't tell us

anything about a helmet etc and I had to do all the research about it. My

pediatrician said that in all the cases she has seen, the head takes care of

itself. I went for a second opinion and have a prescription to get a helmet

made. I have heard there are different kinds but don't know what kind this

is. Only that this is one of the only places to get one made around where we

live. We are upset that she wasn't diagnosed earlier and have since had

workups done through early intervention etc. I never realized how much

damage has been done to her with her ear moved forward and her bulge on her

forhead. I am interested in hearing the results other families have had

using a helmet and also those who have not. I am new at this and am just

trying to gather information and learn as much as I can to help my daughter!

Paige

Report post · April 15, 2001

Welcome Leann-

I just looked at Nina's adorable pictures - I love the first one with

her little tongue sticking out, hehe. She looks like there's some

definite flatness - on her right, right? Has your pediatrician

suggested a helmet or band yet? See what Cranial Tech suggests. Are

her ears assymmetrical also? They kind of looked like they are in

the back view picture. Wishing you a Happy Easter.

Debbie Abby's mom 3/1/00 DOC 2/16/01

p.s. I love the name Nina - thought about it for Abby : )

-- In Plagiocephaly@y..., " LeAnn " <lkeim@s...> wrote:

> Hi everyone. My name is LeAnn and my 6 1/2 month old is Nina. I

> have been learning alot on the torticollis site, as she has been

> going to pt since 4 months of age for that. I unfortunately didn't

> find all of you until a few weeks ago and although her head

> shape is much better, it is still mishapen. I have been looking at

> some of the head shapes in the files but still being new to this, I

> have a hard time picking up the details and knowing what I'm

> looking for. I have posted Nina's pics in the files section and was

> wondering if some of you would look at them and give me some

> feedback? I have sent some of these to Cranial Tech for an

> evaluation and hope to hear something tomorrow from them.

> Thanks for your help!

>

> LeAnn & Nina

Report post · April 15, 2001

Paige,

As you will hear from a lot of people in this group, the doctors told us that

's head would round out on its own. We now have her in a DOC Band - she

started when she was 12 months old - she is now 14 months and we see a very

big change. Her ears are almost aligned and now that her forehead is

" normal " her eye has opened and her face is symmetrical. Where do you live?

We are in the " Metro DC " area (Northern VA). We first went to Children's

Hospital when was 6 months old, and they told us it would round out on

its own. 5 months later we got a second opinion when her head was still

flat. (BTW - she does not have Tort.)

Good luck to you and if you want to, please feel free to e-mail me directly.

-- --

Report post · April 15, 2001

She looks like there's some definite flatness - on her right,

right? - yes - tort on the left, flat on the right

Has your pediatrician suggested a helmet or band yet?

- no. ped has said nothing but he did refer us to PT and to

neurologist; PT keeps thinking she won't need one; neurologist

said keep doing what you're doing since it had been working. I

just don't want to wait too long. we have an MRI on the 26th and

see the neuro again that same day. see ped this tuesday

Are her ears assymmetrical also? - yes, you can see it from the

front too.

LeAnn

Report post · April 16, 2001

Can anyone tell me by looking at Nina's pictures if she has mild,

moderate, or severe plagio? No one has ever told me and I don't

know how it's measured. (I'm pretty sure it is not severe as she

is much better than she was)

LeAnn

Report post · April 16, 2001

LeAnn

Under Bookmarks there is a link

http://www.neurosurgery.org/journals/online_j/feb97/2-2-3.html it explains

how to measure and what is mild, moderate and severe. To me she looks

moderate, but I am no doctor. My son's neurosurgeon and physical therapist

measures . was really severe, 12 mm or greater is considered

severe and was 18 mm. Good luck

Cherie - 's Mom

-----Original Message-----

From: LeAnn [mailto:lkeim@...]

Sent: Sunday, April 15, 2001 9:05 PM

Plagiocephaly

Subject: Re: New member

Can anyone tell me by looking at Nina's pictures if she has mild,

moderate, or severe plagio? No one has ever told me and I don't

know how it's measured. (I'm pretty sure it is not severe as she

is much better than she was)

LeAnn

Report post · April 16, 2001

Paige,

You are have done and are doing the right thing. It is great that you were so

conscientious to go and get a second opinion. That was the right thing to do.

Also, you are getting started at the right time. 6 months is really a prime

time to begin. You should see good results. We had our daughter in a locally

made helmet - she got started at 9 months since we could not convince our ped

that something was wrong until she was 7 months. Then we had to wait to see

the specialist and wait to see the orthotist!!!!! Our ped also told us that

it woud correct itself - wrong!!!

We had in her helmet from the time she was 9 months until about 15

months. We had good luck with our helmet, but our orthotist is the one who

made the difference. A good orthotist will make any of the products out there

work for you. Would you be willing to share where you live? We have almost

700 members here. It is possible that some of our members live near you or

are using the same ortho that you will be using. That was my experience. I

live in Oklahoma and was lucky enough to run across a member here who used my

ortho and the same product we used and filled me before we got started!!

Are you also getting PT for the tort? Correcting that will definately help

with the plagio.

Welcome to the group - I hope you will stick with us. I think you will find

this group to be an awesome source of support, encouragement and answers!!!

Please keep us posted!

Marci (Mom to - helmet grad)

Oklahoma

Report post · April 16, 2001

LeAnn,

Welcome to the group and I will go and check out Nina's files sometime today.

Just wanted to say welcome and I'm glad that you found us! If Nina does have

plagio you can rest easy that you are not too late to seek treatment.

I'll let you know what I think after I have had a chance to take a look!!

Marci (Mom to - helmet grad)

Oklahoma

Report post · April 16, 2001

LeAnn

I just looked at Nina's pictures and she is SOOOOO cute!!!!! Her flattening

looks mild to moderate to me. Not severe for sure. It does look like she has

plagio, in fact, her head looks very similar to my daughter's. She also had

plagio on the right and tort on the left.

Did you say you are going to see the neuro or that you already have? If you

feel like you would be interested in treatment I would start really pushing

now for getting the helmet or band since she is at such an optimal age! Also,

it takes awhile to get through the entire procedure.

You ultimately have to make the decision. We decided to go for it immediately

when the neuro diagnosed plagio since he accompanied his diagnosis with a

HUGE list of possible side effects that could occur is left untreated. (He

kind of used a scare tactic with us in my opionion!!) Still, I do not regret

having gotten treatment and if I were faced with the same situation again I

would do it again!

Please keep us posted!

Marci (Mom to - helmet grad)

Oklahoma

Report post · April 16, 2001

Welcome LeAnn,

Glad that you found us. Nina is such a cutie. That is wonderful that

repositioning her is working. Let us know what CT says.

April Mommy to Bri and Mandy