New here

[Guest guest]

Yeah !!!! What great news!

Mom

[Guest guest]

Hi ,

My son has been in the STARband for 2 weeks now. He just had

his first adjustment yesterday where they took some of the foam out

from inside the band because his head grew. We can see a noticeable

change in his flat spot and even in his face a little bit. The

ladies at his daycare notice the change too. I think the timeframe

that you will see a change depends a lot on the severity and the

age. How old is your son? My son is 6 months and was moderate to

severe to start with, so we may see improvement sooner than if

somebody was older and less severe. Just be patient and hang in

there, and that little head will be round before you know it!

,

Mom to and (STARband 9/14/02)

> Hi I am new here! We just got my son the StarBand. Was interested

> in finding out if there is anyone here who has experience with this

> type of helmet. I keep reading about the DocBand but nothing on

the

> StarBand. He has had it about a month now and we are starting to

see

> some improvement. How soon and what type of improvement to the

head

> do you see with the DocBand also. I am in the dark here. Haven't

> had any other Moms to talk to about this yet. Thanks!

>

> erink8373@a...

[Guest guest]

Hi ,

Welcome to the group. How old is your kiddo? We had the DOC band and we saw

improvement within the first week- my son wore it from 5-8 months.

I will send a post to Niki, another moderator (who hurt her back and is

recooperating)- she used the STARbands for her twins and had great results.

The key is to have a great, experienced orthotist- there have been a few bad

tales to tell about some STARbands, but overrall I have heard good things as

well. I'll see if she can send you some info, and I'm sure you'll get more

responses from other members using the STARband. Good luck and welcome to

the group!

' Mom

[Guest guest]

How soon and what type of improvement to the head

> do you see with the DocBand also. I am in the dark here. Haven't

> had any other Moms to talk to about this yet. Thanks!

>

> erink8373@a...

-

How old is your baby?

My son wore his DOC Band from 5-8 months. We started seeing

improvement within about 3 days. We had good timing He is now 12

mo and looks great!

Dane's mom DOC Grad

[Guest guest]

Hi & welcome to our group!

You've come to the right place .

WE've had lots & lots of members babies wear the STARband - made by

Orthomerica. I think their webpage is www.orthomerica.net (or .com),

check that out for more information.

My daugher wore a STARband nearly 2 yrs ago, she wore one band for

nearly 3 mos with no success. Now don't freak out! Unfortunatley,

Abby's orthotist for her STARband wasn't very well experienced and

ended up causing more harm than good to her head by flattenign some

of her good side of her head (non flat). Anyhoo, be sure to

THOROUGHLY interview your orthotist to make sure he is experienced in

treating plagio babies with the STARband, that's the key to success

with any of these products.

How old is your son? How soon you see improvement depends on age a

lot & growth spurts. If he's under 6 mos yuo should get fast & great

correction, if he's over, correction will probably be a bit slower,

but should still happen!!

Good luck with the band - welcome to the group & please keep us

posted on your progress!

Debbie Abby's mom 3/1/00 STARband 11/7/00-1/26/01 DOCGrad 2/16/01-

6/22/01

MI

> Hi I am new here! We just got my son the StarBand. Was interested

> in finding out if there is anyone here who has experience with this

> type of helmet. I keep reading about the DocBand but nothing on

the

> StarBand. He has had it about a month now and we are starting to

see

> some improvement. How soon and what type of improvement to the

head

> do you see with the DocBand also. I am in the dark here. Haven't

> had any other Moms to talk to about this yet. Thanks!

>

> erink8373@a...

[Guest guest]

Hi Janine! Welcome! It sounds like you've really gotten the ball rolling concerning 's plagio. Good for you! You will find great support here. We all come from different areas around the country, therefore there are many of us utilizing different forms of band/helmet therapy, but overall, we usually all have the same goals and outcomes: our babies come out of it all with round, beautiful heads! At your daughter's age, she should get great results!

Welcome again!

Kellie, mom of , 20 1/2 months

Olympia, WA

[Guest guest]

Janine-

Welcome to the group! is bigger than my daughter was at 12

mo! Great job. That is amazing!

You might want to call the neuro and asked to be put on the

cancelation list. Do you know if this dr. is plagio friendly?

Just to warn you some neuros aren't! Since cranio has been ruled

out, can you ask your ped for a prescription? Is he/she

recommending a band? Oct30 isn't that far away though!

Niki will probably pipe in here. She is in Philly and had a great

orthotist who banded her twins.

Dane's mom DOC Grad

> Hi,

> I am Janine and my daughter is Lynne. She was born on

> December 2, 2001, 12 weeks premature. She has done exceptionally

> well so far and has really caught up as far as growth,she is

> about 19 lbs. (She was 2 lb 11 ounces when she was born). She is

> getting PT for some pretty minor developmental delays, overall she

> is doing great. She does have plagio. We noted it early, but her

> pediatrician felt it would correct itself. It has not and we are

> scheduled to see the neurosurgeon on October 30. I have pushed to

> have the appt moved up but they are too busy. We have ruled out

> craniosynostosis with a skull x ray. I do not know the level of

> her plagio, it is very obvious from looking at the back of her

> head. I am not certain about facial asymetry either- it does look

> like there may be a little in some pictures, but not very

obvious.

> I am a little concerned as she will be almost a year when she

sees

> the neuro. Corrected age for her prematurity she will only be

about

> 8 months though. I am assuming he will reccommend a band/helmut,

> and I hope we can proceed quickly with the process. I am hoping

our

> insurance Co. does not give us a hard time. I have read a lot

about

> plagio, and am very glad to have found this group.!!! I am in

the

> Reading, PA area- about an hour from Philadelphia.

> Any advice or info that anyone has to sheare wuld be much

> appreciated!!

>

> Janine

> Reading, PA

[Guest guest]

Hi Janine & welcome to our group :)

We're glad you have found us. Wow, you certainly sound on top of

's plagio & have everything moving in the right direction.

That's terrific! One of our group moderators, Niki, lives in

Philadelphia, I'm sure she'll offer you some good local information

to help, her twins rec'd STARbands.

Best of luck at your ped. neuro appt the end of the month. You

should check out www.plagiocephaly.org/support then " questions for

the Dr " - there's a great list of printable questions to bring to Drs

or orthotist appts..

Welcome again to our group, we look forward to hearing more from

you.

Debbie Abby's mom DOCgrad

MI

> Hi,

> I am Janine and my daughter is Lynne. She was born on

> December 2, 2001, 12 weeks premature. She has done exceptionally

> well so far and has really caught up as far as growth,she is

> about 19 lbs. (She was 2 lb 11 ounces when she was born). She is

> getting PT for some pretty minor developmental delays, overall she

> is doing great. She does have plagio. We noted it early, but her

> pediatrician felt it would correct itself. It has not and we are

> scheduled to see the neurosurgeon on October 30. I have pushed to

> have the appt moved up but they are too busy. We have ruled out

> craniosynostosis with a skull x ray. I do not know the level of

> her plagio, it is very obvious from looking at the back of her

> head. I am not certain about facial asymetry either- it does look

> like there may be a little in some pictures, but not very obvious.

> I am a little concerned as she will be almost a year when she sees

> the neuro. Corrected age for her prematurity she will only be about

> 8 months though. I am assuming he will reccommend a band/helmut,

> and I hope we can proceed quickly with the process. I am hoping

our

> insurance Co. does not give us a hard time. I have read a lot about

> plagio, and am very glad to have found this group.!!! I am in the

> Reading, PA area- about an hour from Philadelphia.

> Any advice or info that anyone has to sheare wuld be much

> appreciated!!

>

> Janine

> Reading, PA

[Guest guest]

Hey Janine, I am right next to Plymouth Meeting, so not too far from

you. My 8 month old is in a DOC Band, he's been in it 7 weeks now.

We make the 214 mile trek to Paramus NJ and back. Let that neuro

know what YOU want!

-/Logan 8 months

PA

> > Hi,

> > I am Janine and my daughter is Lynne. She was born on

> > December 2, 2001, 12 weeks premature. She has done exceptionally

> > well so far and has really caught up as far as growth,she is

> > about 19 lbs. (She was 2 lb 11 ounces when she was born). She is

> > getting PT for some pretty minor developmental delays, overall

she

> > is doing great. She does have plagio. We noted it early, but her

> > pediatrician felt it would correct itself. It has not and we are

> > scheduled to see the neurosurgeon on October 30. I have pushed

to

> > have the appt moved up but they are too busy. We have ruled out

> > craniosynostosis with a skull x ray. I do not know the level of

> > her plagio, it is very obvious from looking at the back of her

> > head. I am not certain about facial asymetry either- it does

look

> > like there may be a little in some pictures, but not very

obvious.

> > I am a little concerned as she will be almost a year when she

sees

> > the neuro. Corrected age for her prematurity she will only be

about

> > 8 months though. I am assuming he will reccommend a

band/helmut,

> > and I hope we can proceed quickly with the process. I am hoping

> our

> > insurance Co. does not give us a hard time. I have read a lot

about

> > plagio, and am very glad to have found this group.!!! I am in

the

> > Reading, PA area- about an hour from Philadelphia.

> > Any advice or info that anyone has to sheare wuld be much

> > appreciated!!

> >

> > Janine

> > Reading, PA

[Guest guest]

-Hi I used to work in Plymouth Meeting. I know the DOC Band is

available in Pramus, right. I really need to think about that. It

would be a long journey... I need to weigh pros and cons. My

pediatrician told me that the pediatric Neurosx is PRO Helmut, which

I was glad to hear.

Janine

-- In Plagiocephaly@y..., " iamaltobum " <iammichelle@e...> wrote:

> Hey Janine, I am right next to Plymouth Meeting, so not too far

from

> you. My 8 month old is in a DOC Band, he's been in it 7 weeks

now.

> We make the 214 mile trek to Paramus NJ and back. Let that neuro

> know what YOU want!

>

> -/Logan 8 months

> PA

>

>

> > > Hi,

> > > I am Janine and my daughter is Lynne. She was born on

> > > December 2, 2001, 12 weeks premature. She has done

exceptionally

> > > well so far and has really caught up as far as growth,she

is

> > > about 19 lbs. (She was 2 lb 11 ounces when she was born). She

is

> > > getting PT for some pretty minor developmental delays, overall

> she

> > > is doing great. She does have plagio. We noted it early, but

her

> > > pediatrician felt it would correct itself. It has not and we

are

> > > scheduled to see the neurosurgeon on October 30. I have

pushed

> to

> > > have the appt moved up but they are too busy. We have ruled

out

> > > craniosynostosis with a skull x ray. I do not know the level

of

> > > her plagio, it is very obvious from looking at the back of

her

> > > head. I am not certain about facial asymetry either- it does

> look

> > > like there may be a little in some pictures, but not very

> obvious.

> > > I am a little concerned as she will be almost a year when she

> sees

> > > the neuro. Corrected age for her prematurity she will only be

> about

> > > 8 months though. I am assuming he will reccommend a

> band/helmut,

> > > and I hope we can proceed quickly with the process. I am

hoping

> > our

> > > insurance Co. does not give us a hard time. I have read a lot

> about

> > > plagio, and am very glad to have found this group.!!! I am in

> the

> > > Reading, PA area- about an hour from Philadelphia.

> > > Any advice or info that anyone has to sheare wuld be much

> > > appreciated!!

> > >

> > > Janine

> > > Reading, PA

[Guest guest]

Hi Janine,

Welcome to the group! Wow Lynne was a tiny munchkin!! I saw

that some one posted to you to go right to your pediatrician. That is

what I ended up doing. I took my daughter to 2 different ped

neurosurgens to be told by the first one that my babies head was

perfect. The second one, said yes, your daughter has plagio, but a

band won't work for her. Anyway to make a long story short, I went to

my ped and asked for a script for a band. Cranio had already been

ruled out. If you don't want to wait until the end of the month, then

maybe you can go right to your ped and ask for a script?? I'm sure as

soon as Niki gets a chance, she'll let you know where she took her

twins for their STARbands. Once again welcome to the group!

> Hi,

> I am Janine and my daughter is Lynne. She was born on

> December 2, 2001, 12 weeks premature. She has done exceptionally

> well so far and has really caught up as far as growth,she is

> about 19 lbs. (She was 2 lb 11 ounces when she was born). She is

> getting PT for some pretty minor developmental delays, overall she

> is doing great. She does have plagio. We noted it early, but her

> pediatrician felt it would correct itself. It has not and we are

> scheduled to see the neurosurgeon on October 30. I have pushed to

> have the appt moved up but they are too busy. We have ruled out

> craniosynostosis with a skull x ray. I do not know the level of

> her plagio, it is very obvious from looking at the back of her

> head. I am not certain about facial asymetry either- it does look

> like there may be a little in some pictures, but not very obvious.

> I am a little concerned as she will be almost a year when she sees

> the neuro. Corrected age for her prematurity she will only be about

> 8 months though. I am assuming he will reccommend a band/helmut,

> and I hope we can proceed quickly with the process. I am hoping

our

> insurance Co. does not give us a hard time. I have read a lot about

> plagio, and am very glad to have found this group.!!! I am in the

> Reading, PA area- about an hour from Philadelphia.

> Any advice or info that anyone has to sheare wuld be much

> appreciated!!

>

> Janine

> Reading, PA

[Guest guest]

Hey Janine it is beck I am glad you made yourself known and I seeyou have

gotten some great responses so far. Would Hershey be an option for you? We

have a Mom in The Hershey area that had a local helmet for her son that Ic

ould put you in contact with. Also Northeast Philly has the star band and

Niki can fill you in on that she had a great experience with Lawall on both

her twins and that would be better than having to cross the bridge to Jersey

everyday. Well I am so glad you re here-

beck

[Guest guest]

Good, if the neuro is already pro helmet, that's one less thing to

worry about!

- B

> > > > Hi,

> > > > I am Janine and my daughter is Lynne. She was born on

> > > > December 2, 2001, 12 weeks premature. She has done

> exceptionally

> > > > well so far and has really caught up as far as growth,she

> is

> > > > about 19 lbs. (She was 2 lb 11 ounces when she was born). She

> is

> > > > getting PT for some pretty minor developmental delays,

overall

> > she

> > > > is doing great. She does have plagio. We noted it early, but

> her

> > > > pediatrician felt it would correct itself. It has not and we

> are

> > > > scheduled to see the neurosurgeon on October 30. I have

> pushed

> > to

> > > > have the appt moved up but they are too busy. We have ruled

> out

> > > > craniosynostosis with a skull x ray. I do not know the

level

> of

> > > > her plagio, it is very obvious from looking at the back of

> her

> > > > head. I am not certain about facial asymetry either- it does

> > look

> > > > like there may be a little in some pictures, but not very

> > obvious.

> > > > I am a little concerned as she will be almost a year when

she

> > sees

> > > > the neuro. Corrected age for her prematurity she will only be

> > about

> > > > 8 months though. I am assuming he will reccommend a

> > band/helmut,

> > > > and I hope we can proceed quickly with the process. I am

> hoping

> > > our

> > > > insurance Co. does not give us a hard time. I have read a lot

> > about

> > > > plagio, and am very glad to have found this group.!!! I am

in

> > the

> > > > Reading, PA area- about an hour from Philadelphia.

> > > > Any advice or info that anyone has to sheare wuld be much

> > > > appreciated!!

> > > >

> > > > Janine

> > > > Reading, PA

[Guest guest]

Hi Janine, and welcome to the group!! It sounds like Lynne

(beautiful name!!!) is doing really well, you should be very proud of

yourself! My twins were 4 weeks early, and my daughter came home

weighing 4 pounds 11 ounces...isn't it so gratifying seeing them

start to plump up?!

I live in Philadelphia, and both of my twins wore a STARband to

correct their plagio. We went to Harry J. Lawall & Son Prosthetics

and Orthotics. They have quite a few locations in the tristate area

(including Reading), and we went to the one located in northeast

Philadelphia. Our ortho was Bud, and I couldn't be happier with the

treatment he gave us and the correction the band gave the twins! Bud

has about 20 years experience under his belt with treating plagio.

Here is a link to their website so you can see their different

locations. http://www.lawall.com/

Good luck to you and ! Be sure to let us know how the

appointment with the neurosurgeon goes. I was really happy for you to

read that he is plagio friendly, that's one less battle you have to

deal with! And again, welcome to the group!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hi,

> I am Janine and my daughter is Lynne. She was born on

> December 2, 2001, 12 weeks premature. She has done exceptionally

> well so far and has really caught up as far as growth,she is

> about 19 lbs. (She was 2 lb 11 ounces when she was born). She is

> getting PT for some pretty minor developmental delays, overall she

> is doing great. She does have plagio. We noted it early, but her

> pediatrician felt it would correct itself. It has not and we are

> scheduled to see the neurosurgeon on October 30. I have pushed to

> have the appt moved up but they are too busy. We have ruled out

> craniosynostosis with a skull x ray. I do not know the level of

> her plagio, it is very obvious from looking at the back of her

> head. I am not certain about facial asymetry either- it does look

> like there may be a little in some pictures, but not very obvious.

> I am a little concerned as she will be almost a year when she sees

> the neuro. Corrected age for her prematurity she will only be about

> 8 months though. I am assuming he will reccommend a band/helmut,

> and I hope we can proceed quickly with the process. I am hoping

our

> insurance Co. does not give us a hard time. I have read a lot about

> plagio, and am very glad to have found this group.!!! I am in the

> Reading, PA area- about an hour from Philadelphia.

> Any advice or info that anyone has to sheare wuld be much

> appreciated!!

>

> Janine

> Reading, PA

[Guest guest]

My son was also born 4 weeks early, big surprise! He also

went home a 4lb and 11oz. It is great to hear about other people who

are going through so much like I am. I know I feel cheesy but I

really am enjoying your stories and pictures.

Jen

[Guest guest]

Hi Anne,

My name is Camille and I'm also new (just joined a few days ago). I

was very recently diagnosed with RA, and it hasn't quite sunk in for

me either. I'm 30 and have a six month old son--I totally hear you

about the genetics (that was what really got me, emotionally), and

about the energy required with a little one! Speaking of, he just

woke up so I'll be brief--because this diagnosis is brand new to me,

I'm not the one to be giving advice (but there seem to be some very

warm, informed folks in this group who can!) but I wanted to get a

quick note off to you just to let you know you're not alone. I'll be

thinking about you, and sending good thoughts to you and your

daughter. " Talk " to you soon hopefully, via this site, in the

meantime, take good care.

Camille.

> Hi I am new here. My name is Anne and I am in the process of being

> diagnosed with RA. I am familiar with autimmune deseases because my

> mother suffers horribly from Schleroderma as well as a few others

> that have showed up since her initial diagnosis.

>

> I have been in excrutiating pain for the last 4 weeks and just went

> to see my Dr. She says with my family history, that she is 90%

> positive it is RA. I was sent for a bunch of blood tests and should

> know for sure in a day or two. In the mean time I was prescribed

> Vioxx to help relieve the pain. Unfortunatly I have to wait until

pay

> day to fill the prescription (a week away). SO I have booked a week

> off work to get some rest (I am in retail and my job keeps me

running

> constantly with little to no sit down time)

>

> I guess what I would like to know is what I should expect from here

> on out. My DR told me that it is not like it was years ago where

> people would become crippled and in wheelchairs and that there are

> numerous drugs therapies that they use to try and keep the

crippling

> effects at bay. I am waiting for a referral to see a joint

> specialist. What is it that he/she would do?

>

> I have done alot of reading today on the condition and I think it

has

> not quite sunk in fully. I suppose it will soon enough. So far it

is

> very depressing. I am only 29 years old and I have a 2 year old

> daughter that requires enormous amounts of energy and I just can't

> seem to muster it up. Now I guess that she stands a chance of

getting

> some horrible incurable desease becuase of my damn genetics. I

think

> this is the most depressing of all. Sorry this is so long. I am

> pretty down in the dumps about the whole thing.

>

>

> Anne

[Guest guest]

Hello Anne,

I know the feeling, your aulful young to have this already but it can come at

anytime.I want to welcome to our group, we have lots of nice pepole here, I was

so lucky to find this group, I don't say to much part of the time, I like to

read and learn as much as I can on it, I'm some what new too.This is the place

to be when your down and when your having a good day. I have learned quite a bit

from everybody, and still learning. I've been down a little also, I'm not so

sure what to expect either. I take it day to day. I hope that you feel better

soon and again welcome

Take care-Jane

Anne <jain_doe2001@...> wrote:Hi I am new here. My name is Anne and I am

in the process of being

diagnosed with RA. I am familiar with autimmune deseases because my

mother suffers horribly from Schleroderma as well as a few others

that have showed up since her initial diagnosis.

I have been in excrutiating pain for the last 4 weeks and just went

to see my Dr. She says with my family history, that she is 90%

positive it is RA. I was sent for a bunch of blood tests and should

know for sure in a day or two. In the mean time I was prescribed

Vioxx to help relieve the pain. Unfortunatly I have to wait until pay

day to fill the prescription (a week away). SO I have booked a week

off work to get some rest (I am in retail and my job keeps me running

constantly with little to no sit down time)

I guess what I would like to know is what I should expect from here

on out. My DR told me that it is not like it was years ago where

people would become crippled and in wheelchairs and that there are

numerous drugs therapies that they use to try and keep the crippling

effects at bay. I am waiting for a referral to see a joint

specialist. What is it that he/she would do?

I have done alot of reading today on the condition and I think it has

not quite sunk in fully. I suppose it will soon enough. So far it is

very depressing. I am only 29 years old and I have a 2 year old

daughter that requires enormous amounts of energy and I just can't

seem to muster it up. Now I guess that she stands a chance of getting

some horrible incurable desease becuase of my damn genetics. I think

this is the most depressing of all. Sorry this is so long. I am

pretty down in the dumps about the whole thing.

Anne

[Guest guest]

Welcome Anne. I wish it were different circumstances that we meet, but glad

you found us. We have many members that are in the same boat and can

understand how you feel. Although they believe genetics play a strong role

in developing autoimmune diseases, there is no one in my family with any yet

I have RA. If it is found that it¹s genetic, with all the new research

being done on genetics, it just may be in our future and your daughter¹s

future to alter these genes and stop this disease. Until then we just have

to deal with it the best we can.

I¹m assuming that the joint specialist that you are being referred to is a

rheumatologist. They specialize in RA and other rheumatic diseases. A

rheumy will do an examination of your joints, order x-rays and blood tests.

From there they will try to get a proper diagnoses, which sometimes takes

time. If RA is suspected, you may be started on a DMARD, probably

plaquenil.

I hope they give you something for pain.

Here is a link to an article about first rheumatologist appointment:

http://rheumatoid.arthritis.freehosting.net/help.html#md

While you¹re at this site, look around and you¹ll find a lot of info on RA.

a

> Hi I am new here. My name is Anne and I am in the process of being

> diagnosed with RA. I am familiar with autimmune deseases because my

> mother suffers horribly from Schleroderma as well as a few others

> that have showed up since her initial diagnosis.

>

> I have been in excrutiating pain for the last 4 weeks and just went

> to see my Dr. She says with my family history, that she is 90%

> positive it is RA. I was sent for a bunch of blood tests and should

> know for sure in a day or two. In the mean time I was prescribed

> Vioxx to help relieve the pain. Unfortunatly I have to wait until pay

> day to fill the prescription (a week away). SO I have booked a week

> off work to get some rest (I am in retail and my job keeps me running

> constantly with little to no sit down time)

>

> I guess what I would like to know is what I should expect from here

> on out. My DR told me that it is not like it was years ago where

> people would become crippled and in wheelchairs and that there are

> numerous drugs therapies that they use to try and keep the crippling

> effects at bay. I am waiting for a referral to see a joint

> specialist. What is it that he/she would do?

>

> I have done alot of reading today on the condition and I think it has

> not quite sunk in fully. I suppose it will soon enough. So far it is

> very depressing. I am only 29 years old and I have a 2 year old

> daughter that requires enormous amounts of energy and I just can't

> seem to muster it up. Now I guess that she stands a chance of getting

> some horrible incurable desease becuase of my damn genetics. I think

> this is the most depressing of all. Sorry this is so long. I am

> pretty down in the dumps about the whole thing.

>

>

> Anne

>

>

>

[Guest guest]

Anne: Welcome to the group. I am sorry to hear of your dx. It is really hard

to take at first, especially in one so young as yourself. I know you have a

two year old and that makes things difficult especially when you are in pain.

I don't know your financial situation but there are programs that can help

with the cost of your medicine if you qualify. Try logging on to the

Medicine Program to get forms for your dr to complete. There are different

cutoffs for each company. Perhaps you can qualify for some assistance.

Unfortunately some of meds can be very expensive.

The first thing you must do is don't blame yourself. You don't know that

your child will inherit RA.. Cross that bridge when you come to it. Try to

get some rest each day if possible, ie, sleep when the baby is resting. Do

only what you feel can do on the bad days. Try alternating heat and cold on

your joints. It does help relieve some of the pain. Try not to get stressed

as it does aggravate RA. Just remember, take care of yourself first,

hopefully your husband will be supportive and help on the days when you are

not able to do much. If not, it's no big deal if the house isn't perfect.

Try not to get discouraged and remember you are not alone. This group is so

supportive and /a always keep on top of all the latest info for us.

I will keep you in my thoughts and prayers.

Blessings,

Jan in SC

[Guest guest]

Hi Betsy,

Welcome to the group. I am about at the same place you are, with

conflicting diagnoses. All my blood tests are negative, too, but the

pain sure isn't! The rheumy currently tells me it is fibromyalgia,

so am being treated for that.

You will get a lot of good information and support here, and it's

nice to talk to people who understand how we feel without being

judgmental. By the way, what part of California are you from? I

grew up in Redondo Beach, but now live in Southern Indiana.

Happy night,

Judi

[Guest guest]

Hi Judy,

Nice to know I have company, even if it is for something like this!

I live in the Sierra Nevada foothills, a little gold rush town called

Columbia, just east of the central valley region. Formerly from the San

Francisco Bay Area. My husband is from Southern California, he misses the

weather but not the congestion and traffic!

Thanks for the welcome, one of the hardest things to deal with has been not

being able to discuss anything with anyone who understands.

Betsy

[ ] Re: New Here

Hi Betsy,

Welcome to the group. I am about at the same place you are, with

conflicting diagnoses. All my blood tests are negative, too, but the

pain sure isn't! The rheumy currently tells me it is fibromyalgia,

so am being treated for that.

You will get a lot of good information and support here, and it's

nice to talk to people who understand how we feel without being

judgmental. By the way, what part of California are you from? I

grew up in Redondo Beach, but now live in Southern Indiana.

Happy night,

Judi

[Guest guest]

Hi Betsy...

Welcome to the great... there is a great and supportive group of caring

people in here...

I remember when I was first diagnosed with RA. The doctor I saw first

referred me to a specialist... but, he had a series of the necessary blood

tests done. The RA test came back negative... but, he said that was no

indication that I did not have RA.

The same thing happens to me and I'm on treatment. One goes through periods

of feeling fantastic and then all of a sudden you feel like staying in bed

because of the pain and discomfort.

Stay safe, sweetie...

Pami

Check out my " e-store " at

http://pamelataylorefreestores.com

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-- [ ] New Here

Hello everyone,

I just joined your group in the hope that I could find some

information in your posts about my not yet diagnosed condition. My

internist thinks RA but all my blood tests ( ESR, ANA and RF ) came

back negative so he's not sure and is sending me to a rheumatologist.

I have had pain and some swelling in both joints at the base of my

thumbs for almost a year with a visible enlargement of the joint on

the right side. Also, pain in both balls of feet just before the big

toe and intermittently in ankles, wrists and elbows. Just went

through a very painful time of about a month where my hands got so

sore and stiff I could hardly write my name. Now all of a sudden,

it's better (not gone unfortunately)and I'm confused.

I've also had fatigue, generally feeling like I'm constantly coming

down with the flu or something but never quite get it, especially

over the last two months.

I'd appreciate any posts from anyone with negative blood tests and/or

similar experiences.

Betsy in CA

[Guest guest]

Hi Betsy. Glad you found us but sorry it has to be because you¹re not

feeling well. Your internist is great for sending you to a rheumatologist

for further investigating. RA isn¹t easy to diagnose and lab tests are only

a part of the procedure of diagnosing RA. I am also negative for RA and ANA

but my sed rate shows inflammation. Your symptoms sound like RA.

I was diagnosed over 25 years ago. A good place to start reading is the web

site for our group. There is a link to it at the bottom of every post. The

page on diagnosis is:

http://rheumatoid.arthritis.freehosting.net/Lab%20Tests.html

Feel free to ask any questions. We have many members that have been in your

shoes.

a

> Hello everyone,

>

> I just joined your group in the hope that I could find some

> information in your posts about my not yet diagnosed condition. My

> internist thinks RA but all my blood tests ( ESR, ANA and RF ) came

> back negative so he's not sure and is sending me to a rheumatologist.

>

> I have had pain and some swelling in both joints at the base of my

> thumbs for almost a year with a visible enlargement of the joint on

> the right side. Also, pain in both balls of feet just before the big

> toe and intermittently in ankles, wrists and elbows. Just went

> through a very painful time of about a month where my hands got so

> sore and stiff I could hardly write my name. Now all of a sudden,

> it's better (not gone unfortunately)and I'm confused.

>

> I've also had fatigue, generally feeling like I'm constantly coming

> down with the flu or something but never quite get it, especially

> over the last two months.

>

> I'd appreciate any posts from anyone with negative blood tests and/or

> similar experiences.

>

> Betsy in CA

>

>

>

>

>

>

>

[Guest guest]

Thanks so much for the reply!

I'm beginning to know what you mean by feeling ok and then all of a sudden

wanting to stay in bed. I had a couple of weeks that were terrible for my

hands and a few other places and then all of a sudden I woke up one day

feeling better. Now I'm just waiting for it to return, I have no idea how

long this will last.

Thanks for the support, It's a great comfort to me.

Betsy

[ ] New Here

Hello everyone,

I just joined your group in the hope that I could find some

information in your posts about my not yet diagnosed condition. My

internist thinks RA but all my blood tests ( ESR, ANA and RF ) came

back negative so he's not sure and is sending me to a rheumatologist.

I have had pain and some swelling in both joints at the base of my

thumbs for almost a year with a visible enlargement of the joint on

the right side. Also, pain in both balls of feet just before the big

toe and intermittently in ankles, wrists and elbows. Just went

through a very painful time of about a month where my hands got so

sore and stiff I could hardly write my name. Now all of a sudden,

it's better (not gone unfortunately)and I'm confused.

I've also had fatigue, generally feeling like I'm constantly coming

down with the flu or something but never quite get it, especially

over the last two months.

I'd appreciate any posts from anyone with negative blood tests and/or

similar experiences.

Betsy in CA

[Guest guest]

Thanks a for the tip to the web site, I've been scouring the web for

info but not sure if I've seen that one yet.

25 years, huh? Wow, and I'm complaining about a few months! I hope you

have found some good ways to deal with it. I have already found that

massage therapy works well for me, if nothing else for the stress!

Betsy

Re: [ ] New Here

Hi Betsy. Glad you found us but sorry it has to be because you¹re not

feeling well. Your internist is great for sending you to a rheumatologist

for further investigating. RA isn¹t easy to diagnose and lab tests are

only

a part of the procedure of diagnosing RA. I am also negative for RA and

ANA

but my sed rate shows inflammation. Your symptoms sound like RA.

I was diagnosed over 25 years ago. A good place to start reading is the

web

site for our group. There is a link to it at the bottom of every post.

The

page on diagnosis is:

http://rheumatoid.arthritis.freehosting.net/Lab%20Tests.html

Feel free to ask any questions. We have many members that have been in

your

shoes.

a

> Hello everyone,

>

> I just joined your group in the hope that I could find some

> information in your posts about my not yet diagnosed condition. My

> internist thinks RA but all my blood tests ( ESR, ANA and RF ) came

> back negative so he's not sure and is sending me to a rheumatologist.

>

> I have had pain and some swelling in both joints at the base of my

> thumbs for almost a year with a visible enlargement of the joint on

> the right side. Also, pain in both balls of feet just before the big

> toe and intermittently in ankles, wrists and elbows. Just went

> through a very painful time of about a month where my hands got so

> sore and stiff I could hardly write my name. Now all of a sudden,

> it's better (not gone unfortunately)and I'm confused.

>

> I've also had fatigue, generally feeling like I'm constantly coming

> down with the flu or something but never quite get it, especially

> over the last two months.

>

> I'd appreciate any posts from anyone with negative blood tests and/or

> similar experiences.

>

> Betsy in CA

>

>

>

>

>

>

>