Re: hello all!

[Guest guest]

I'm wishing for the warmth to return to Houston and your life, Michele. Not

a day goes by that I don't wonder how you are doing.

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

From: " A Coolperson " <dusty@...>

" RA SUPPORT @ " < egroups>

Sent: Tuesday, December 12, 2000 8:36 AM

Subject: [ ] Hello all!

> Gee, its so cold outside; Here in Houston the windchill is in the teens;

not good for people with our diseases or anybody for that matter; am trying

to get on with life; It is so hard since the death of my son Alphonso but I

have strong faith in God that HE had his reasons and Al is with the Lord;

this brings me comfort; I am not sleeping well but am sleeping; and am

coping with flares from my fibromyalgia but am hanging in there; I

appreciate all the kindness that you all sent to me when I posted that he

died; it was very kind guys; hope all can stay well for a while and now we

can focus on the weather for a few days rather then this countries mixed up

political mess; God bless, Michele in Houston

[Guest guest]

Hi Stasia,

My daughter Hope had a CT scan (does the same thing as an MRI scan,

so Im told) before she was referred for a helmet. It was to check

that there was no fusing of the skull bones going on and rule out

craniosynostosis. They sedated her by giving her some meds in a

dropper (they masked the bitter taste with some syrup), and she just

went to sleep in my arms. She wasnt out cold, but rather just

sleeping soundly. She woke up after about an hour and was fine,

although a bit hungry, as she hadnt been allowed to eat for three

hours before the sedation! They do the sedation with small babies

(Hope was 3 mos at the time) so that they dont move around during the

scan.

Dont worry about it - Im sure it will be fine, and it is just routine.

Good luck to you and .

Kimberley

(Evan and Hope's Mummy)

> Hello All!

>

> It's been only a short while since I've visited these boards (3

days

> to be exact) and I must say you are busy posters!!! It took me

over

> an hour to get caught up!! LOL.

>

> We take my son, for a sedated MRI brain scan on Monday

> (26th). The docs assure me that nothing is wrong, but they said

> they " just want to be sure " so they are ordering this...should I be

> worried?

>

> We still haven't heard back from Lawall about his band that was

> fitted on 3/12 I called them last week and they said it still

wasn't

> in. I am hoping that it will be in on the 26th and we can get it

> after the MRI... will be knocked out and maybe he will

not

> know what happened when he wakes up with the band on his head!!

>

> I'll let you know what happens...Please keep us in mind on Monday.

> Thanks

> Stasia

[Guest guest]

:

Glad to hear is doing so well. Not so glad to hear about

your dad. There are so many scary things going on with health

problems on this board lately, I feel for you as well as everyone

else who has posted with their health scares of late. Everyone is

most definitely in my prayers each & every night. Best wishes to

your dad.

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

> Hello everyone!

>

> Just wanted to update you on the latest here at our house and ask

all

> of you to keep my family (especially my Dad) in your prayers.

>

> is doing great with his STARband. He is not minding it

at

> all and on the one day that we had 80 degree weather he didn't

sweat

> as much as I thought he would. We went to the park and no on said a

> word about his band or even gave us strange looks...I was

surprised!

> I had expected the worse, but instead it was a delightful adventure

> shared with my two sons.

>

> My dad is in Coronary Care Unit ICU and is now bumped up to the

> Status 1A on the Heart Transplant list. He had been home on IV

meds

> for about a year now and he was just admitted to the hospital this

> week. They have no idea when he will come home they are trying to

> get all his meds straightened out and get him feeling well again.

I

> guess we'll be spending our Easter in the hospital!

>

> I just wanted to let you know we are doing well. I can't believe

how

> much you miss in just a few days!! You people are busy!!

>

> I hope everyone has a great holiday!

> Stasia

[Guest guest]

,

We will be praying for your dad to get his new heart very soon as

well as a speedy recovery to his medication situation.

I am so glad that is doing well with his band and that you

had such a good experience in the park.

Take care,

April,

Mommy to Bri and Mandy

> Hello everyone!

>

> Just wanted to update you on the latest here at our house and ask

all

> of you to keep my family (especially my Dad) in your prayers.

>

> is doing great with his STARband. He is not minding it

at

> all and on the one day that we had 80 degree weather he didn't sweat

> as much as I thought he would. We went to the park and no on said a

> word about his band or even gave us strange looks...I was surprised!

> I had expected the worse, but instead it was a delightful adventure

> shared with my two sons.

>

> My dad is in Coronary Care Unit ICU and is now bumped up to the

> Status 1A on the Heart Transplant list. He had been home on IV meds

> for about a year now and he was just admitted to the hospital this

> week. They have no idea when he will come home they are trying to

> get all his meds straightened out and get him feeling well again. I

> guess we'll be spending our Easter in the hospital!

>

> I just wanted to let you know we are doing well. I can't believe

how

> much you miss in just a few days!! You people are busy!!

>

> I hope everyone has a great holiday!

> Stasia

[Guest guest]

Sorry, but trial and error is the only test I know of. My son has a

terrible time with colorings (until enzymes). Maybe someone else

knows of a test.

> Hi all. I'm enjoying this learning process. Helps me to be more

> comfortable each day we progress. I am getting closer and closer

to an

> understanding that my guy has some kind of serious reaction to some

kinds of

> additives or colorings. We were at a birthday party where all they

offered

> were peanut butter and jelly sandwiches on whole wheat (okay, we

were

> covered) and then, bar-b-q flavored potato chips and cheese

doodles! Inside

> 10 minutes I was watching him get beligerent and angry and wanted

more of

> the chips and wouldn't touch the sandwich. The yelling/scream

response to

> everything and all I had as leverage was " no sandwich, no more

chips " (at

> least I had something!). Then to top it all off, cake was covered

with these

> little candy colored dinosaurs! I'm not sure what the problem

input was,

> but the output wasn't great.

>

> Anyone know how to do a really good specific test for food coloring

that I

> can be sure it wasn't some other " thing " he ate that caused it?

Like eat

> the same foods and drinks for two days and then give him something

with the

> bad stuff and watch and see?

>

> Thanks for all your support...

>

> Lynn in MD

[Guest guest]

Artificial colors, flavoring and additive are easily tested by NAET pr's

using the sample testing vials. We train all out parents to test their

childrens foods, supplements and environmental factor using basic muscle

response testing.

it is very simple and works wonderfully.

Pat O.

[Guest guest]

Hi Jeanine,

I use Humira and yes, it stings when the medicine goes in. My pain

usually subsides after a minute or so. I am so sorry to hear you have

to endure so much pain.

When I have had cortizone injections on my elbow (RA Nodule), my

rhuemy always sprays a topical that numbs the site. I wonder if that

can be prescribed for you? Maybe something to ask your Rhuemy about.

I hope you find some relief soon and know I am thinking of you.

Hugs,

Alan

--- In , " Jeanine Kinsey " <jckinsey@b...>

wrote:

> Sorry about that blip a little while ago, I didn't realize that I

had

> replied to the wrong message until I was reading the last digest

and trying

> to figure out when I had posted! I had thought about it, but

didn't think

> I'd actually done it!

>

> Things are definitely on the upswing around here. I am feeling

REALLY good

> following my last back injection. I saw the rheumy on Monday and

he was

> thrilled as well. My hands hurt, but he doesn't really see any

swelling

> right now. He does suspect that all the cortizone they pumped into

my back

> could be helping me as well. We'll see in a month or two on that

count.

>

> Welcome to all the new members! You are part of a wonderful family

that

> really does care about each and everyone of it's members. We pray

for each

> other and are always there for a shoulder to cry on. They are also

a wealth

> of information. It never ceases to amaze me what they can find!

>

> Now, I need your help, family. My dr says that I am the only one

he has

> heard about with this problem, and I want to know if he is right.

I am

> using the Humira, and while it does seem to be helping, it is an

agonizing

> injection. I occassionaly had pain with the Enbrel, but this is

> excruciating! The needle doesn't bother me, it's the medicine

going in, and

> the 1/2 hour following it. I've tried the thigh and the stomach,

tried fast

> and slow, tried cold and room temp, etc. The last time I iced the

leg for

> 15 minutes before. I was able to get the injection in with only

the last

> bit hurting like the dickens, but still couldn't touch the leg for

1/2 hour,

> even to stop the bleeding, which I had not had before. Having just

been

> throught the novacaine injections, it is more painful than those,

but

> doesn't go numb afterwords. Once the pain leaves, there is no

residual

> mark, pain, bruising (except where I bled this time) or any other

reaction.

> Has anyone else had any similar reactions? Have you found any

relief or

> tricks that might help?

> My rheumy says to remember that is only 1/2 hour every 2 weeks, and

I do

> agree completely which is why I am not trying to stop the

medication, just

> looking for a way not to dread it!

>

> Any suggestions are welcome.

>

> (((((((Gentle hugs to all))))))

>

> Jeanine in FL

[Guest guest]

In a message dated 18/04/2004 18:54:39 Central Standard Time,

bluerose11@... writes:

> I know that it will work that month if I am very sleepy and

> have trouble driving home after my injection. Then the next 2 days I

> hardly get up out of bed.

>

Same for me, Althea! In fact, one time I wasn't as tired afterwards, and it

didn't seem to " take " as well that month! I usually have someone drive me

home after an infusion, because I'm afraid I'll be in an accident. I always

need

2 days off work after an infusion to sleep. Cary

[Guest guest]

RA can be very hard to diagnose accurately and it sometimes takes a year or more to get a confirmed diagnosis. There are over 100 kinds of inflammatory arthritis with RA being the most common one. (Osteoarthritis is the molst common arthritis but it is not inflammatory.) The American College of Rheumatology has seven criteria for diagnosing RA and having any four of them qualifies for a positive diagnosis. One is the blood test, one is damage seen on x-ray, and the other five are based on patient input or doctor examination.

I think the blood test is highly overrated as a diagnostic tool because there are many false positives and many false negatives.

I look forward to hearing more from you after your doctor's appointment. God bless.

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

From: Lollipop girl

Rheumatoid Arthritis

Sent: Saturday, May 07, 2005 7:21 PM

Subject: hello all!

Hi, I joined this group a few years ago when I got a blood test saying I had a very high rheumatoid factor. Being naive to what that meant I started doing research on R.A. I'm 24 years old, my mom was diagnosed with lupus at 25 (right after she had me). I was officially diagnosed with Fybromyalgia about 2 years ago if memory serves (which it usually doesnt j.k.)Now I am seeing a very well known and highly recognzied rheumatologist in my area (he has been treating my mom for 20 + years). I have only had one visit with him thus far. WHile he was doing the routine checks, my neck would crack when moved, my knees would pop when bent etc. etc. He just said that I should not sound like this at 24. He kept asking me if I get dry mouth. I basically told him that generally speaking I'm always thirsty. My younger sibling is the same way. So I wouldnt think that dry mouth is something that would alarm me or even be somethign I noticed on a daily basis. He told me he thinks I have some form of R.A. that is not very progressive (knock on wood). but we have not gotten the blood test results back (go this tuesday the 10th). Now mind you, this is the THIRD rheumatologist I've seen. The first two said I had fybromyalgia. THis one said there is no way I have that. I even had X-rays taken back in October 2004 and they said no signs of rheumatoid artritis, though the areas they x-ray'd hurt like hell.Sometimes my pain is centralized to one side of my body then progressies from top to bottom or vice versa. Usually its in my forearm, neck is really bad and shoulder area. my wrists and elbows can get bad in cool weather especially.I'm sorry to ramble... But I just wanted to get your educated input on this whole thing. How many dr.s did you all see until you were finally correctly diagnosed? Is that normal for doctors not to diagnose right away? My rheumatoid factor seems to go up every year. If I do have R.A., would that mean it is getting worse? I will be sure to check back in after my results tuesday..Thank you all and God Bless...

[Guest guest]

Hi :

When I first starting having problems, I went to see many doctors - a

podiatrist, a physical therapist, an orthopedic surgeon. I had not yet

taken any blood tests, thinking my problem was just a mechanical thing.

In fact, I took xrays and the ortho guy said " you have no evidence of

any kind of arthritis. " I think you can have the disease, but not yet

have it manifest in the kind of joint damage that would show up on an

xray - that's for much later. Anyway, just to let you know that

sometimes it is a long and frustrating road to the correct diagnosis.

Good luck to you.

gloria

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

From: Lollipop girl <lollipop725@...>

Rheumatoid Arthritis

Sent: Sun, 08 May 2005 02:21:17 -0000

Subject: hello all!

Hi, I joined this group a few years ago when I got a blood test

saying I had a very high rheumatoid factor. Being naive to what that

meant I started doing research on R.A.

I'm 24 years old, my mom was diagnosed with lupus at 25 (right after

she had me). I was officially diagnosed with Fybromyalgia about 2

years ago if memory serves (which it usually doesnt j.k.)

Now I am seeing a very well known and highly recognzied

rheumatologist in my area (he has been treating my mom for 20 +

years). I have only had one visit with him thus far. WHile he was

doing the routine checks, my neck would crack when moved, my knees

would pop when bent etc. etc. He just said that I should not sound

like this at 24.

He kept asking me if I get dry mouth. I basically told him that

generally speaking I'm always thirsty. My younger sibling is the same

way. So I wouldnt think that dry mouth is something that would alarm

me or even be somethign I noticed on a daily basis.

He told me he thinks I have some form of R.A. that is not very

progressive (knock on wood). but we have not gotten the blood test

results back (go this tuesday the 10th). Now mind you, this is the

THIRD rheumatologist I've seen. The first two said I had

fybromyalgia. THis one said there is no way I have that.

I even had X-rays taken back in October 2004 and they said no signs

of rheumatoid artritis, though the areas they x-ray'd hurt like hell.

Sometimes my pain is centralized to one side of my body then

progressies from top to bottom or vice versa. Usually its in my

forearm, neck is really bad and shoulder area. my wrists and elbows

can get bad in cool weather especially.

I'm sorry to ramble... But I just wanted to get your educated input

on this whole thing. How many dr.s did you all see until you were

finally correctly diagnosed? Is that normal for doctors not to

diagnose right away? My rheumatoid factor seems to go up every year.

If I do have R.A., would that mean it is getting worse?

I will be sure to check back in after my results tuesday..

Thank you all and God Bless...

[Guest guest]

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

From: gloriarex@...

>When I first starting having problems, I went to see many doctors - a podiatrist, a physical therapist, an orthopedic surgeon. I had not yet taken any blood tests, thinking my problem was just a mechanical thing. In fact, I took xrays and the ortho guy said "you have no evidence of any kind of arthritis." I think you can have the disease, but not yet have it manifest in the kind of joint damage that would show up on an xray - that's for much later.

I went through a similiar situation. My rheumy x-rayed and did the blood test. RF wasn't that high and though there was damage showing in the x-rays, it wasn't bad. He was shocked when I walked in his office and my hand was so swollen I couldn't bend a single finger. That's when he talked to me about going on Enbrel, which I still have not found out if Medicare is going to pay for. A process that should take 2-3 weeks has gone on three months.

Nina

[Guest guest]

I believe you with the blood test.. my primary physician was such a

four letter word... i would constantly go to him with back pain,

joint pain... (mind you I'm 24 years old), he would say I'm just out

of shape or get this that I'm growing LOL... he also said 90% of

Americans suffer from back pain, that doesn't mean they need a

rheumotologist. So finally i said do blood work... he saw my

Rheumatoid factor was high, and called me to tell me I had RA.

when I told my rheumy this he almost died.. saying that is NOT a

difinitive reasoning for having a high Rheumy factor in your blood..

Needless to say I left my primary physican not long after that...-

-- In Rheumatoid Arthritis , " Harold Van Tuyl "

<hvantuyl@c...> wrote:

> RA can be very hard to diagnose accurately and it sometimes takes a

year or more to get a confirmed diagnosis. There are over 100 kinds

of inflammatory arthritis with RA being the most common one.

(Osteoarthritis is the molst common arthritis but it is not

inflammatory.) The American College of Rheumatology has seven

criteria for diagnosing RA and having any four of them qualifies for

a positive diagnosis. One is the blood test, one is damage seen on x-

ray, and the other five are based on patient input or doctor

examination.

>

> I think the blood test is highly overrated as a diagnostic tool

because there are many false positives and many false negatives.

>

> I look forward to hearing more from you after your doctor's

appointment. God bless.

> ----- Original Message -----

> From: Lollipop girl

> Rheumatoid Arthritis

> Sent: Saturday, May 07, 2005 7:21 PM

> Subject: hello all!

>

>

> Hi, I joined this group a few years ago when I got a blood test

> saying I had a very high rheumatoid factor. Being naive to what

that

> meant I started doing research on R.A.

>

> I'm 24 years old, my mom was diagnosed with lupus at 25 (right

after

> she had me). I was officially diagnosed with Fybromyalgia about 2

> years ago if memory serves (which it usually doesnt j.k.)

>

> Now I am seeing a very well known and highly recognzied

> rheumatologist in my area (he has been treating my mom for 20 +

> years). I have only had one visit with him thus far. WHile he was

> doing the routine checks, my neck would crack when moved, my

knees

> would pop when bent etc. etc. He just said that I should not

sound

> like this at 24.

>

> He kept asking me if I get dry mouth. I basically told him that

> generally speaking I'm always thirsty. My younger sibling is the

same

> way. So I wouldnt think that dry mouth is something that would

alarm

> me or even be somethign I noticed on a daily basis.

>

> He told me he thinks I have some form of R.A. that is not very

> progressive (knock on wood). but we have not gotten the blood

test

> results back (go this tuesday the 10th). Now mind you, this is

the

> THIRD rheumatologist I've seen. The first two said I had

> fybromyalgia. THis one said there is no way I have that.

>

> I even had X-rays taken back in October 2004 and they said no

signs

> of rheumatoid artritis, though the areas they x-ray'd hurt like

hell.

>

> Sometimes my pain is centralized to one side of my body then

> progressies from top to bottom or vice versa. Usually its in my

> forearm, neck is really bad and shoulder area. my wrists and

elbows

> can get bad in cool weather especially.

>

> I'm sorry to ramble... But I just wanted to get your educated

input

> on this whole thing. How many dr.s did you all see until you were

> finally correctly diagnosed? Is that normal for doctors not to

> diagnose right away? My rheumatoid factor seems to go up every

year.

> If I do have R.A., would that mean it is getting worse?

>

> I will be sure to check back in after my results tuesday..

>

> Thank you all and God Bless...

>

>

>

>

>

>

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

----------

>