???

[Guest guest]

Tasha,

Max is the same way about being outside. He even cries at daycare

when it is time to go inside for lunch. Bu tI do have to say, the

days he isoutside playing he takes a 3 hour nap from 12-3 pm.

daycare loves it and so do I. He such a happy boy, especially when

he is rested. I wish I could have a 3 hour nap during the day.

Dave and his dad (grandpa) wil lbe building Max's swingset in the

weeks to come. We can't get dirt delivered because there is still a

road ban for the winter. The road ban for trucks should be lifted

on monday. Imagine mid-April and the roads are still too dangerous

for trucks.

You have to take a picture/video tape the boys' reaction to their

playset. I'm sure it'll be priceless.

With this new cast of ryan's any leakage or wet cast? Are you still

using the poise pads? Just curious. The Luv's were working well,

but they have no elastic bands around the waist, so I switched to

Huggies overnights which are working well. When is 's next cast

change?

Aekta

> > > > > >

> > > > > > We have been very happy with Dr. Thometz, although I

know

> he

> > > > would

> > > > > not cast another member of this sites child....

> > > > > >

> > > > > > ***I am curious as to why Dr. Thometz will not cast a

> child

> > > in

> > > > > need, from this group?

> > > > > >

> > > > > > HRH

> > > > > > New Member

> > > > > >

> > > > > > Hello,

> > > > > > I'm new to the group. I'm very glad I found you -

there's

> not

> > > a

> > > > > lot of

> > > > > > info. on infantile scoliosis out there. My son, Noah,

has

> > > been

> > > > > > diagnosed with Infantile Scoliosis. He is 21 months

old.

> We

> > > were

> > > > > > referred by his pediatrican to Dr. Lonstein at TC

Spine

> > > Center

> > > > > in

> > > > > > Mpls. I'm told he is a good doctor. We've had one

appt.

> so

> > > far.

> > > > > > Noah's curve is 30 degrees and his RVAD is 20. The

doctor

> > > says

> > > > > Noah

> > > > > > is " right on the fence " as far as determining whether

or

> not

> > > his

> > > > > curve

> > > > > > is likely to progress. We are to go back in 3 months

to

> have

> > > a

> > > > > new

> > > > > > set of x-rays. If he is progressing - I will

definately

> want

> > > to

> > > > > > discuss casting as an option. A lot of what I'm

reading

> has

> > > > > indicated

> > > > > > that Noah's numbers are not good, so I'm trying to

> prepare

> > > > > myself for

> > > > > > the worst without panicking. Any thoughts or advice

is

> > > > > appreciated.

> > > > > > Thanks!

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Hi Aekta,

Yes that is hard to believe it is April and the roads are bad.

So how is the weather? When does it typically start getting warmer? And what

is a warm day for you guys?

So far so good on the DRY cast. I use the Poise Pads only at night inside his

diaper, shove a sanitary pad up the front of the cast and put a bigger size

Pampers diaper over everything. Every once in a while when he wakes up in the

morning his legs are slightly damp. Those mornings the diaper and Poise pad are

FULL, but the cast is still dry! Thank God!

Has Max been getting his cast wet at night? If so give the Poise pads a try.

I will continue to use them until is out of a cast or learns to use the

potty..........whichever comes first.

His next cast change is not until May 31. This cast was done on February 22.

Have you heard when Max will get his next cast? I wish my boys would take a 3

hr nap. That is GREAT that he will still take one that long. Does he do that

for you at home?

I think would sleep longer, but usually wakes him up. Every now

and then I can sneak in and take out so can keep sleeping.

has always been the better, longer sleeper out of the 2.

Doesn't happen everyday, but I try to nap when they do. I LOVE MY NAPS!

Keep me posted on Max.

Tasha

babymaxpd wrote:

Tasha,

Max is the same way about being outside. He even cries at daycare

when it is time to go inside for lunch. Bu tI do have to say, the

days he isoutside playing he takes a 3 hour nap from 12-3 pm.

daycare loves it and so do I. He such a happy boy, especially when

he is rested. I wish I could have a 3 hour nap during the day.

Dave and his dad (grandpa) wil lbe building Max's swingset in the

weeks to come. We can't get dirt delivered because there is still a

road ban for the winter. The road ban for trucks should be lifted

on monday. Imagine mid-April and the roads are still too dangerous

for trucks.

You have to take a picture/video tape the boys' reaction to their

playset. I'm sure it'll be priceless.

With this new cast of ryan's any leakage or wet cast? Are you still

using the poise pads? Just curious. The Luv's were working well,

but they have no elastic bands around the waist, so I switched to

Huggies overnights which are working well. When is 's next cast

change?

Aekta

> > > > > >

> > > > > > We have been very happy with Dr. Thometz, although I

know

> he

> > > > would

> > > > > not cast another member of this sites child....

> > > > > >

> > > > > > ***I am curious as to why Dr. Thometz will not cast a

> child

> > > in

> > > > > need, from this group?

> > > > > >

> > > > > > HRH

> > > > > > New Member

> > > > > >

> > > > > > Hello,

> > > > > > I'm new to the group. I'm very glad I found you -

there's

> not

> > > a

> > > > > lot of

> > > > > > info. on infantile scoliosis out there. My son, Noah,

has

> > > been

> > > > > > diagnosed with Infantile Scoliosis. He is 21 months

old.

> We

> > > were

> > > > > > referred by his pediatrican to Dr. Lonstein at TC

Spine

> > > Center

> > > > > in

> > > > > > Mpls. I'm told he is a good doctor. We've had one

appt.

> so

> > > far.

> > > > > > Noah's curve is 30 degrees and his RVAD is 20. The

doctor

> > > says

> > > > > Noah

> > > > > > is " right on the fence " as far as determining whether

or

> not

> > > his

> > > > > curve

> > > > > > is likely to progress. We are to go back in 3 months

to

> have

> > > a

> > > > > new

> > > > > > set of x-rays. If he is progressing - I will

definately

> want

> > > to

> > > > > > discuss casting as an option. A lot of what I'm

reading

> has

> > > > > indicated

> > > > > > that Noah's numbers are not good, so I'm trying to

> prepare

> > > > > myself for

> > > > > > the worst without panicking. Any thoughts or advice

is

> > > > > appreciated.

> > > > > > Thanks!

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Tasha,

Your going to laugh, but then it tells ya they must be doing the cast right.

I went and looked at the pictures and I couldn’t tell who had the cast. The

two pictures of the twins, I’m sitting here trying to tell who had the cast.

So which one has the cast? I’m guessing it was the boy who was wearing the

green striped shirt in the last picture, only because of what the other

parents have said that it was easier to sit on the floor kneeling instead of

having legs straight out or Indian style.

Betty

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.5.446 / Virus Database: 269.4.0/762 - Release Date: 4/15/2007

4:22 PM

[Guest guest]

Wrong one. In the last photo is on the left. He doesn't have a problem

sitting flat on his bottom on the floor. He did right at first, but now no

problem.

When he has a shirt on it is hard to tell he even has a cast on.

Tasha

Betty Hicks wrote: Tasha,

Your going to laugh, but then it tells ya they must be doing the cast right.

I went and looked at the pictures and I couldn’t tell who had the cast. The

two pictures of the twins, I’m sitting here trying to tell who had the cast.

So which one has the cast? I’m guessing it was the boy who was wearing the

green striped shirt in the last picture, only because of what the other

parents have said that it was easier to sit on the floor kneeling instead of

having legs straight out or Indian style.

Betty

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.5.446 / Virus Database: 269.4.0/762 - Release Date: 4/15/2007

4:22 PM

[Guest guest]

Hi Tasha,

We had snow last week. This week have a heat wave in the mid-50's.

We are so excited that Saturday will be 70! We'll be outside all

day! We're a little behind on the warmer weather, but the winter

(snow)wasn't so bad this year.

Max's cast remains dry in the morning. I hope it continues to do

so. Max wil lbe casted hopefully at the next ETTP at Shriner's

Chicago in June. His actual cast change is suppose to be in May,

but Dr. Sturm said 3 weeks longer in his current cast should not

have any affect.

Re: naps-of course he does NOT nap 3 hours at home. I think daycare

tires him out (especially playing outside). He also will not leave

my side on the weekends. It's hard to do get anything done except

laundry-he loves to help put clothes in the dryer.

We had out first report of Max having a major meltdown at daycare.

He was banging his head in the door and wall. He started this at

home also, but working in child psych-I've learned to ignore

negative attention seeking behavior. He has yet injured his head

with any bruising or scares. If it hurts, he'll stop. He doesn't do

this frequently, but I kinda chuckle and shake my head when I see

him do it. All in all he's a great child. He has his moments, but

entailed, we all have them, we're only human.

Aekta

> > > > > > >

> > > > > > > We have been very happy with Dr. Thometz, although I

> know

> > he

> > > > > would

> > > > > > not cast another member of this sites child....

> > > > > > >

> > > > > > > ***I am curious as to why Dr. Thometz will not cast a

> > child

> > > > in

> > > > > > need, from this group?

> > > > > > >

> > > > > > > HRH

> > > > > > > New Member

> > > > > > >

> > > > > > > Hello,

> > > > > > > I'm new to the group. I'm very glad I found you -

> there's

> > not

> > > > a

> > > > > > lot of

> > > > > > > info. on infantile scoliosis out there. My son, Noah,

> has

> > > > been

> > > > > > > diagnosed with Infantile Scoliosis. He is 21 months

> old.

> > We

> > > > were

> > > > > > > referred by his pediatrican to Dr. Lonstein at TC

> Spine

> > > > Center

> > > > > > in

> > > > > > > Mpls. I'm told he is a good doctor. We've had one

> appt.

> > so

> > > > far.

> > > > > > > Noah's curve is 30 degrees and his RVAD is 20. The

> doctor

> > > > says

> > > > > > Noah

> > > > > > > is " right on the fence " as far as determining whether

> or

> > not

> > > > his

> > > > > > curve

> > > > > > > is likely to progress. We are to go back in 3 months

> to

> > have

> > > > a

> > > > > > new

> > > > > > > set of x-rays. If he is progressing - I will

> definately

> > want

> > > > to

> > > > > > > discuss casting as an option. A lot of what I'm

> reading

> > has

> > > > > > indicated

> > > > > > > that Noah's numbers are not good, so I'm trying to

> > prepare

> > > > > > myself for

> > > > > > > the worst without panicking. Any thoughts or advice

> is

> > > > > > appreciated.

> > > > > > > Thanks!

> > > > > > >

> > > > > > >

> > > > > > >

[Guest guest]

Betty,

Yes the address is the same. Getting to the hospital from 90 is very

easy. Only 3 turns after you get off the highway ramp. Exit Harlem

Ave. Take Harlem Ave to Gunnison or Forrest Preserve Dr. And then

turn on Oak Park Ave. Easy as 1, 2,3! The area is very residential.

Please let me know if you need anymore info.

Aekta

>

> Isn't the hospital at 2211 N. Oak Park Ave. still? I know that

was the

> address when I was going there as a kid. That does help that Dr.

Sturm is

> the Chief of Staff, now we just need to inform him that if he ok's

it, there

> will be fundraising for it.

>

> My fear will be getting lost in Chicago, it's been so long since

I've been

> there that I can't remember the turns we made to get there.

>

> Betty

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.5.446 / Virus Database: 269.4.0/762 - Release Date:

4/15/2007

> 4:22 PM

>

>

>

>

[Guest guest]

In a message dated 11/16/2007 10:13:15 AM Central Standard Time,

ksrb3@... writes:

Hi Everyone,

My name is Sherrill my son's name is Kiandre. He is two years old and

he has d/s. I at first didnt adjust to the diagnosis well... with

faith in God and having a group to talk to helped alot a whole lot...

I was able to reach out to other parents to gain more information

about my new baby..My husband seems to not really accept that our son

has delays and there are just some things that he may or not be able

to do in life. I want him to be as educated and understanding as to

who to expect where our son is concerned. Any advice will be

appreciated.

HI Sherrill

First welcome to our group here ............ Ive been here so long that I

really cant remember when I joined lol You will love the wealth of information,

kindness and support here ........... not just for issues with your child but

your whole family

When Sara was born (she's 15 now) she had many health issues so for months

our only concern was survival, Watching my hubby evolve through years has been

fun lol I think he had low expectations when Sara was dx I probably did too

until we met a family who introduced to us their teen son with DS our

perceptions totally changed.

Mike really takes a back-seat approach to Sara, meaning Im the one who is in

charge. This also means Im the one who has to research and make decisions.

Now I do take him to all major DR appts and IEP meetings and he really has

learned a lot through the years and surprises me at meetings when he speaks lol

Mike is the one who takes Sara to the movies, library and soccer (I go to

but its really Sara and daddy time) they both share a passion for restaurants

lol I just get drug along out of their kindness lol Sara's told everyone her

dad cooks better breakfasts then me and gives better hugs .......... in my

defense Mike can hug her and pick her up off her feet. People tell us we

compliment each other, each of us with our own strengths.

My advice would be to give your hubby some more time, keep him involved with

discussion and participation, he'll get it sooner than you think many

times Mike would say " Do I really need to go to this meeting " my answer is

always YES

Kathy mom to Sara 15

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

************************************** See what's new at http://www.aol.com

[Guest guest]

This seems like a low sodium for Kippered snacks. Suggest you review

if the Na content is per can or per sardine.

May need more spiro.

On Mar 31, 2008, at 4:50 PM, Valarie wrote:

> I just had kippered snacks (70 mg Na) and some 0 Na rice crackers. I

> had

> let myself get too hungry. Heart is beating hard, BP up to 154/87,

> pulse

> 95, sweating. What is it???? Is it the lack of K in my meal? I had bad

> sweats this early a.m. with BP at 143. It was 129, pulse 74 yesterday

> evening.

>

> Val

May your pressure be low!

CE Grim BS, MS, MD

High Blood Pressure Consulting

Specializing in Difficult to Manage High Blood Pressure

Consult the following at for details

bloodpressureline

hyperaldosteronism

[Guest guest]

One can = one serving = 70 mg Na. I also had some potato chips with no

sodium, so I did get some K. I got all that at Healthy Heart Market online.

The response I got was precisely the same as when I know I ate too much

salt. Also, for the last several months, I have felt like I have some blood

sugar problems. My glucose tested at 99 on 1/7. Previously, it had been in

the " impaired " area. In fact, I took Actos (10 more lbs) and metformin (7

more lbs) in '04 and '05. I was on straight HCTZ then. I used to be able

to go all day and not even feel hunger until late afternoon. Now, I get

shaky if I don't eat. I'm going to try eating less more often.

I get K tested on Thursday and will go from there.

BTW, the brown rice crackers from HHM are bleh! I only had a couple little

ones.

Thank you for continuing to respond to my multitude of episodes and chatter.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

This seems like a low sodium for Kippered snacks. Suggest you review

if the Na content is per can or per sardine.

May need more spiro.

[Guest guest]

OK sounds like a low Na Kippers.

Never heard of chips with NO sodium.

On Mar 31, 2008, at 7:36 PM, Valarie wrote:

> One can = one serving = 70 mg Na. I also had some potato chips with no

> sodium, so I did get some K. I got all that at Healthy Heart Market

> online.

> The response I got was precisely the same as when I know I ate too

> much

> salt. Also, for the last several months, I have felt like I have some

> blood

> sugar problems. My glucose tested at 99 on 1/7. Previously, it had

> been in

> the " impaired " area.

Blood sugar problems in anyone who has a BMI over 25 is due to having a

BMI over 25 and choosing the wrong grandparents.

> In fact, I took Actos (10 more lbs) and metformin (7

> more lbs) in '04 and '05.

The good studies have shown that diet is as good as or better than

metformin. What did your Dr recommend re diet at that time.

> I was on straight HCTZ then. I used to be able

> to go all day and not even feel hunger until late afternoon. Now, I

> get

> shaky if I don't eat. I'm going to try eating less more often.

>

> I get K tested on Thursday and will go from there.

>

> BTW, the brown rice crackers from HHM are bleh! I only had a couple

> little

> ones.

As Dr.Kempner said: if you are tryhing to lose weight why are do you

want things that taste good.

>

> Thank you for continuing to respond to my multitude of episodes and

> chatter.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

>

> This seems like a low sodium for Kippered snacks. Suggest you review

> if the Na content is per can or per sardine.

>

> May need more spiro.

>

>

[Guest guest]

Read my paper on the evolution of PA in our files and take to your dr

Sent from my iPhone

On Sep 17, 2008, at 5:25 PM, Arthur Springer <as99@...> wrote:

> " There are a number of other conditions that could be responsible for

> your problems and these will be checked at the same time as the

> hyperaldosteronism investigations are being carried out. "

>

> Such as?

>

>

[Guest guest]

please identify location of your paper .... it doesn't turn up in

normal searches. many thanks.

===========================================================================---

In hyperaldosteronism , Lowerbp2 <lowerbp2@...> wrote:

>

> Read my paper on the evolution of PA in our files and take to your dr

>

> Sent from my iPhone

>

> On Sep 17, 2008, at 5:25 PM, Arthur Springer <as99@...> wrote:

>

> > " There are a number of other conditions that could be responsible for

> > your problems and these will be checked at the same time as the

> > hyperaldosteronism investigations are being carried out. "

> >

> > Such as?

> >

> >

>

>

>

[Guest guest]

Gosh, I wish I had the answer. 2 of my children have AS, but have not had pain

in their spines as of yet. Their pain is mainly in their knees, ankles and feet

with some shoulder and finger pain. Neither one has had much luck with the

Methotrexate or Enbrel either. We just kind of struggle through with

anti-inflammatories and on/off the others as needed at different times.

Is there any way you could get a second opinion from another Rheumatologist? It

would be nice to know for sure whether it's OA or AS, etc.... Best of luck

to you!

Myndi Fitzgerald

Ph: 317-503-3701

Fitz's Travel

www.ytbtravel.com/myndifitz

Flights, Hotels, Cruises, Concert/Sporting Event Tickets...and more!

YTB Travel Network International

Business Travel & Leisure Travel

Honeymoon & Anniversary Registry - www.ytbromance.com/myndifitz

Send Flowers - www.ytbflowers.com/myndifitz

Mountain Cabin Rentals, Hunting & Fishing trips and equipment -

www.ytboutdoors.com/myndifitz

Golf vacations & tee times - www.ytbgolf.com/myndifitz

Everything for your entertainment needs.

Interested in learning more about an entertainment/travel home based web

business? Visit www.ytb.com/myndifitz to learn how easy it is.

AdvoCare Nutritional Supplements

www.AdvoCare.com/08054392

________________________________

From: <leslielick777@...>

Sent: Tuesday, November 4, 2008 11:20:37 AM

Subject: ???

Hi

I don't know if I'm at the right site or not. I have been undergoing treatment

for RA with

methotrexate and Enbrel for the last couple years. I never have swelling in my

wrists,

hands, feet ankles, but I do have a lot of pain in my hands, fingers, wrists,

hips, neck, and

tailbone.

My rheumy suggested that maybe i have AS. I was having a lot of pain in my

cervical

spine and tail bone, so I saw an orthopedist who took x-rays and an MRI of my

cervical

spine (neck) and just x-rays of my lower spine (tailbone) area and said I have

degenerative

disc disease which is causing compression on my nerves and spinal cord. The

recommended treatment is fusion.

THe MTX and Enbrel have not helped, so my rheumy told me to quit the Enbrel and

she

would get me on another biologics drug, but she has had trouble getting approval

from

my insurance company, so after 8 months there has been no new drugs introduced.

I

continued taking the methotrexate, but still no help.

At this point, I don't know what to think. I do have osteoarthritis, and wonder

if all these

symptoms are just OA instead or RA or AS.

Any ideas would be greatly appreciated.

Thanks,

[Guest guest]

--- Thanks Myndi, and I " m so sorry to hear that your children have AS. It's so

awful to see

our children suffer so. I think that another opinion is a good place to start.

Do you know

if there are special tests or x-rays that would definitively diagnose AS or any

other

rheumatic disease?

Thanks for your help.

>

> Gosh, I wish I had the answer. 2 of my children have AS, but have not had

pain in their

spines as of yet. Their pain is mainly in their knees, ankles and feet with

some shoulder

and finger pain. Neither one has had much luck with the Methotrexate or Enbrel

either.

We just kind of struggle through with anti-inflammatories and on/off the others

as

needed at different times.

>

> Is there any way you could get a second opinion from another Rheumatologist?

It would

be nice to know for sure whether it's OA or AS, etc.... Best of luck to you!

>

> Myndi Fitzgerald

> Ph: 317-503-3701

>

>

> Fitz's Travel

> www.ytbtravel.com/myndifitz

> Flights, Hotels, Cruises, Concert/Sporting Event Tickets...and more!

> YTB Travel Network International

> Business Travel & Leisure Travel

>

>

> Honeymoon & Anniversary Registry - www.ytbromance.com/myndifitz

> Send Flowers - www.ytbflowers.com/myndifitz

> Mountain Cabin Rentals, Hunting & Fishing trips and equipment -

www.ytboutdoors.com/myndifitz

> Golf vacations & tee times - www.ytbgolf.com/myndifitz

> Everything for your entertainment needs.

>

>

> Interested in learning more about an entertainment/travel home based web

business?

Visit www.ytb.com/myndifitz to learn how easy it is.

>

>

> AdvoCare Nutritional Supplements

> www.AdvoCare.com/08054392

>

>

>

>

> ________________________________

> From: <leslielick777@...>

>

> Sent: Tuesday, November 4, 2008 11:20:37 AM

> Subject: ???

>

>

> Hi

>

> I don't know if I'm at the right site or not. I have been undergoing

treatment for RA

with

> methotrexate and Enbrel for the last couple years. I never have swelling in

my wrists,

> hands, feet ankles, but I do have a lot of pain in my hands, fingers, wrists,

hips, neck,

and

> tailbone.

>

> My rheumy suggested that maybe i have AS. I was having a lot of pain in my

cervical

> spine and tail bone, so I saw an orthopedist who took x-rays and an MRI of my

cervical

> spine (neck) and just x-rays of my lower spine (tailbone) area and said I have

degenerative

> disc disease which is causing compression on my nerves and spinal cord. The

> recommended treatment is fusion.

>

> THe MTX and Enbrel have not helped, so my rheumy told me to quit the Enbrel

and she

> would get me on another biologics drug, but she has had trouble getting

approval from

> my insurance company, so after 8 months there has been no new drugs

introduced. I

> continued taking the methotrexate, but still no help.

>

> At this point, I don't know what to think. I do have osteoarthritis, and

wonder if all these

> symptoms are just OA instead or RA or AS.

>

> Any ideas would be greatly appreciated.

>

> Thanks,

>

>

>

>

>

>

[Guest guest]

My kids have MRI's when there is a question of active arthritis. It shows up on

the films. The reason they determined it was AS versus another form is because

of the way they " presented " with their pain. AS is hard to " see " because it

doesn't flare up visibly to our eyes. I've been told that this is partly

because there are often tendon issues with the joint issues in AS. Apparently

our docs could see the tendon involvement on the MRI's as well. Both of my

kids' blood work always comes back normal, so this doesn't help us. The docs

can tell by where the pain is located on the kids.

Hope this helps. Feel free to contact me at any time if you have more questions

or just want to share/vent! What part of the country do you live in? I

have a lot of contacts and I'd be happy to try to find you a good doc near where

you live.

Myndi Fitzgerald

Ph: 317-503-3701

Fitz's Travel

www.ytbtravel.com/myndifitz

Flights, Hotels, Cruises, Concert/Sporting Event Tickets...and more!

YTB Travel Network International

Business Travel & Leisure Travel

Honeymoon & Anniversary Registry - www.ytbromance.com/myndifitz

Send Flowers - www.ytbflowers.com/myndifitz

Mountain Cabin Rentals, Hunting & Fishing trips and equipment -

www.ytboutdoors.com/myndifitz

Golf vacations & tee times - www.ytbgolf.com/myndifitz

Everything for your entertainment needs.

Interested in learning more about an entertainment/travel home based web

business? Visit www.ytb.com/myndifitz to learn how easy it is.

AdvoCare Nutritional Supplements

www.AdvoCare.com/08054392

________________________________

From: <leslielick777@...>

Sent: Wednesday, November 5, 2008 8:17:13 AM

Subject: Re: ???

--- Thanks Myndi, and I " m so sorry to hear that your children have AS. It's so

awful to see

our children suffer so. I think that another opinion is a good place to start.

Do you know

if there are special tests or x-rays that would definitively diagnose AS or any

other

rheumatic disease?

Thanks for your help.

>

> Gosh, I wish I had the answer. 2 of my children have AS, but have not had

pain in their

spines as of yet. Their pain is mainly in their knees, ankles and feet with

some shoulder

and finger pain. Neither one has had much luck with the Methotrexate or Enbrel

either.

We just kind of struggle through with anti-inflammatories and on/off the others

as

needed at different times.

>

> Is there any way you could get a second opinion from another Rheumatologist?

It would

be nice to know for sure whether it's OA or AS, etc.... Best of luck to you!

>

> Myndi Fitzgerald

> Ph: 317-503-3701

>

>

> Fitz's Travel

> www.ytbtravel. com/myndifitz

> Flights, Hotels, Cruises, Concert/Sporting Event Tickets...and more!

> YTB Travel Network International

> Business Travel & Leisure Travel

>

>

> Honeymoon & Anniversary Registry - www.ytbromance. com/myndifitz

> Send Flowers - www.ytbflowers. com/myndifitz

> Mountain Cabin Rentals, Hunting & Fishing trips and equipment -

www.ytboutdoors. com/myndifitz

> Golf vacations & tee times - www.ytbgolf. com/myndifitz

> Everything for your entertainment needs.

>

>

> Interested in learning more about an entertainment/ travel home based web

business?

Visit www.ytb.com/ myndifitz to learn how easy it is.

>

>

> AdvoCare Nutritional Supplements

> www.AdvoCare. com/08054392

>

>

>

>

> ____________ _________ _________ __

> From: <leslielick777@ ...>

> groups (DOT) com

> Sent: Tuesday, November 4, 2008 11:20:37 AM

> Subject: ???

>

>

> Hi

>

> I don't know if I'm at the right site or not. I have been undergoing

treatment for RA

with

> methotrexate and Enbrel for the last couple years. I never have swelling in

my wrists,

> hands, feet ankles, but I do have a lot of pain in my hands, fingers, wrists,

hips, neck,

and

> tailbone.

>

> My rheumy suggested that maybe i have AS. I was having a lot of pain in my

cervical

> spine and tail bone, so I saw an orthopedist who took x-rays and an MRI of my

cervical

> spine (neck) and just x-rays of my lower spine (tailbone) area and said I have

degenerative

> disc disease which is causing compression on my nerves and spinal cord. The

> recommended treatment is fusion.

>

> THe MTX and Enbrel have not helped, so my rheumy told me to quit the Enbrel

and she

> would get me on another biologics drug, but she has had trouble getting

approval from

> my insurance company, so after 8 months there has been no new drugs

introduced. I

> continued taking the methotrexate, but still no help.

>

> At this point, I don't know what to think. I do have osteoarthritis, and

wonder if all these

> symptoms are just OA instead or RA or AS.

>

> Any ideas would be greatly appreciated.

>

> Thanks,

>

>

>

>

>

>

[Guest guest]

Hi -

I was recently diagnosed with spondylitis, but have had back pain for

years. I am on Enbrel weekly and also Azulfadine/Sulfasalazine. From what

I understand, the Methyltrexate is great for external arthritis - hands,

ankles, knees, but the Sulfasalazine works better for the back pain. It is

a DMARD like methyltrexate, so maybe the Enbrel/Sulfasalazine would work

better for you?

-

On Tue, Nov 4, 2008 at 10:20 AM, <leslielick777@...> wrote:

> Hi

>

> I don't know if I'm at the right site or not. I have been undergoing

> treatment for RA with

> methotrexate and Enbrel for the last couple years. I never have swelling in

> my wrists,

> hands, feet ankles, but I do have a lot of pain in my hands, fingers,

> wrists, hips, neck, and

> tailbone.

>

> My rheumy suggested that maybe i have AS. I was having a lot of pain in my

> cervical

> spine and tail bone, so I saw an orthopedist who took x-rays and an MRI of

> my cervical

> spine (neck) and just x-rays of my lower spine (tailbone) area and said I

> have degenerative

> disc disease which is causing compression on my nerves and spinal cord. The

>

> recommended treatment is fusion.

>

> THe MTX and Enbrel have not helped, so my rheumy told me to quit the Enbrel

> and she

> would get me on another biologics drug, but she has had trouble getting

> approval from

> my insurance company, so after 8 months there has been no new drugs

> introduced. I

> continued taking the methotrexate, but still no help.

>

> At this point, I don't know what to think. I do have osteoarthritis, and

> wonder if all these

> symptoms are just OA instead or RA or AS.

>

> Any ideas would be greatly appreciated.

>

> Thanks,

>

>

>

>

>

[Guest guest]

--- Hi ,

I was on Enbrel and (MTX) Methotrexate (8)tablets a week and a weekly

injection of Enbrel. It has done nothing for me. That's why my

doctor wanted to try Remicade along with the MTX, but that's when

things at my doctor's office went down hill. My doctor has tried for

8 months now to get me approved for Remicade, but has had no luck, so

every time I call which is about every week or so, the office takes

the message, and I never hear from them again and then I call and the

pattern repeats. I'm just really frustrated and tired of hurting so

much and want some answer.

Thanks for your advice and help.

> Hi -

>

> I was recently diagnosed with spondylitis, but have had back pain for

> years. I am on Enbrel weekly and also Azulfadine/Sulfasalazine.

From what

> I understand, the Methyltrexate is great for external arthritis - hands,

> ankles, knees, but the Sulfasalazine works better for the back pain.

It is

> a DMARD like methyltrexate, so maybe the Enbrel/Sulfasalazine would work

> better for you?

>

> -

>

> On Tue, Nov 4, 2008 at 10:20 AM, <leslielick777@...> wrote:

>

> > Hi

> >

> > I don't know if I'm at the right site or not. I have been undergoing

> > treatment for RA with

> > methotrexate and Enbrel for the last couple years. I never have

swelling in

> > my wrists,

> > hands, feet ankles, but I do have a lot of pain in my hands, fingers,

> > wrists, hips, neck, and

> > tailbone.

> >

> > My rheumy suggested that maybe i have AS. I was having a lot of

pain in my

> > cervical

> > spine and tail bone, so I saw an orthopedist who took x-rays and

an MRI of

> > my cervical

> > spine (neck) and just x-rays of my lower spine (tailbone) area and

said I

> > have degenerative

> > disc disease which is causing compression on my nerves and spinal

cord. The

> >

> > recommended treatment is fusion.

> >

> > THe MTX and Enbrel have not helped, so my rheumy told me to quit

the Enbrel

> > and she

> > would get me on another biologics drug, but she has had trouble

getting

> > approval from

> > my insurance company, so after 8 months there has been no new drugs

> > introduced. I

> > continued taking the methotrexate, but still no help.

> >

> > At this point, I don't know what to think. I do have

osteoarthritis, and

> > wonder if all these

> > symptoms are just OA instead or RA or AS.

> >

> > Any ideas would be greatly appreciated.

> >

> > Thanks,

> >

> >

> >

> >

> >

>

>

>

[Guest guest]

,

Did you try calling the ins company yourself? Wouldn't hurt to try. Don't give

up at the

doc's office. I would start calling everyday. Any other doc options if they

don't get back

to you?

Myndi

> >

> > > Hi

> > >

> > > I don't know if I'm at the right site or not. I have been undergoing

> > > treatment for RA with

> > > methotrexate and Enbrel for the last couple years. I never have

> swelling in

> > > my wrists,

> > > hands, feet ankles, but I do have a lot of pain in my hands, fingers,

> > > wrists, hips, neck, and

> > > tailbone.

> > >

> > > My rheumy suggested that maybe i have AS. I was having a lot of

> pain in my

> > > cervical

> > > spine and tail bone, so I saw an orthopedist who took x-rays and

> an MRI of

> > > my cervical

> > > spine (neck) and just x-rays of my lower spine (tailbone) area and

> said I

> > > have degenerative

> > > disc disease which is causing compression on my nerves and spinal

> cord. The

> > >

> > > recommended treatment is fusion.

> > >

> > > THe MTX and Enbrel have not helped, so my rheumy told me to quit

> the Enbrel

> > > and she

> > > would get me on another biologics drug, but she has had trouble

> getting

> > > approval from

> > > my insurance company, so after 8 months there has been no new drugs

> > > introduced. I

> > > continued taking the methotrexate, but still no help.

> > >

> > > At this point, I don't know what to think. I do have

> osteoarthritis, and

> > > wonder if all these

> > > symptoms are just OA instead or RA or AS.

> > >

> > > Any ideas would be greatly appreciated.

> > >

> > > Thanks,

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

--- Hi Myndi,

You must have been reading my mind, or I was reading yours, don't know

which. ) I am planning to start daily calls today to Ins. company

and doctor's office and see if they get sick of me calling all the

time. Thanks for the suggestion. It's hard not to just give up and quit.

Take care,

>

> ,

>

> Did you try calling the ins company yourself? Wouldn't hurt to try.

Don't give up at the

> doc's office. I would start calling everyday. Any other doc

options if they don't get back

> to you?

>

> Myndi

>

>

> > >

> > > > Hi

> > > >

> > > > I don't know if I'm at the right site or not. I have been

undergoing

> > > > treatment for RA with

> > > > methotrexate and Enbrel for the last couple years. I never have

> > swelling in

> > > > my wrists,

> > > > hands, feet ankles, but I do have a lot of pain in my hands,

fingers,

> > > > wrists, hips, neck, and

> > > > tailbone.

> > > >

> > > > My rheumy suggested that maybe i have AS. I was having a lot of

> > pain in my

> > > > cervical

> > > > spine and tail bone, so I saw an orthopedist who took x-rays and

> > an MRI of

> > > > my cervical

> > > > spine (neck) and just x-rays of my lower spine (tailbone) area and

> > said I

> > > > have degenerative

> > > > disc disease which is causing compression on my nerves and spinal

> > cord. The

> > > >

> > > > recommended treatment is fusion.

> > > >

> > > > THe MTX and Enbrel have not helped, so my rheumy told me to quit

> > the Enbrel

> > > > and she

> > > > would get me on another biologics drug, but she has had trouble

> > getting

> > > > approval from

> > > > my insurance company, so after 8 months there has been no new

drugs

> > > > introduced. I

> > > > continued taking the methotrexate, but still no help.

> > > >

> > > > At this point, I don't know what to think. I do have

> > osteoarthritis, and

> > > > wonder if all these

> > > > symptoms are just OA instead or RA or AS.

> > > >

> > > > Any ideas would be greatly appreciated.

> > > >

> > > > Thanks,

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

Actually, the insurance companies are hoping that we'll give up and go away.

That's why

they make us jump through hoops sometimes. Don't give up. Hopefully a few

phone calls

and a little persistence will pay off! Good luck!

[Guest guest]

---Thanks so very much for the support. I will be talking to my ins.

company as well as the doctor again.

> Actually, the insurance companies are hoping that we'll give up and

go away. That's why

> they make us jump through hoops sometimes. Don't give up.

Hopefully a few phone calls

> and a little persistence will pay off! Good luck!

>

[Guest guest]

Begin forwarded message:

> From: " Valarie " <val@...>

> Date: April 22, 2009 1:02:40 PM EDT

> " 'arthur springer' " <as99@...>, " 'Clarence Grim' "

> <lowerbp2@...>

> Subject: RE: ???

>

> How is it diagnosed? We have not discussed it as far as I can

> remember. It

> is best if you post to the list so everyone who is interested can

> talk/listen.

>

> Val

>

>

> ???

>

> I know it is difficult, but has anyone at the hyperA site ever been

> diagnosed for chronic fatigue syndrome, a difficult diagnosis but one

> that may fit some of the people with acute fatigue?

> as99

>

[Guest guest]

you can look it up at nih/medline

On Apr 22, 2009, at 1:02 PM, Valarie wrote:

> How is it diagnosed? We have not discussed it as far as I can

> remember. It

> is best if you post to the list so everyone who is interested can

> talk/listen.

>

> Val

>

>

> ???

>

> I know it is difficult, but has anyone at the hyperA site ever been

> diagnosed for chronic fatigue syndrome, a difficult diagnosis but one

> that may fit some of the people with acute fatigue?

> as99

>

[Guest guest]

Trudy,The word is ischemic and it means deficient blood supply. ischemic changes would be changes to the normal blood supply pattern. Where are you seeing this sweetie? What does the report you are reading say? If you want to message me offline, that's fine. Hugs,TeriFrom: "trudykinsey@..." <trudykinsey@...>Hcv < >Sent: Tue, September 14, 2010 11:55:40 AMSubject: [ ] ???

Hey, Teri, what does " aschimic"(sp) mean? As in " aschemic changes..."

http://facebook.com/people/andTrudy-Kinsey/1340460877 "

"A well- behaved woman never made history"...Mae West

http://oktravels.wordpress.com

http://allrecipes.com/cook/TrudyK/profile.aspx

[Guest guest]

No secrets from any ofyall; thx anyway. My written report fromradiologist of brain MRI said abnormal iscimic( sp) changes in white matter. Just wondering what to make of that-can't see nuerologist till Oct 4. He is only nuerologist for about 100 miles. I called to see if I could get in sooner. Nope.http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx On Sep 14, 2010, at 2:04 PM, Teri Gottlieb <theresagottlieb@...> wrote:

Trudy,The word is ischemic and it means deficient blood supply. ischemic changes would be changes to the normal blood supply pattern. Where are you seeing this sweetie? What does the report you are reading say? If you want to message me offline, that's fine. Hugs,TeriFrom: "trudykinsey@..." <trudykinsey@...>Hcv < >Sent: Tue, September 14, 2010 11:55:40 AMSubject:

[ ] ???

Hey, Teri, what does " aschimic"(sp) mean? As in " aschemic changes..."

http://facebook.com/people/andTrudy-Kinsey/1340460877 "

"A well- behaved woman never made history"...Mae West

http://oktravels.wordpress.com

http://allrecipes.com/cook/TrudyK/profile.aspx