Re: rheumy appt. with aundrea

[Guest guest]

Good news - I needed to hear it. I know your family did too. Hope things

for Aundrea gets better soon. How is her blood sugar? I am hyperglycemic and

I have some of the same symptoms. Sandi Ken Hunter (7 Systemic)

[Guest guest]

,

What a relief...

I hope you can find out whats causing the lightheadness,dizziness,shortness

of breath and fatigue quickly.

Like you said hopefuly it will just burn itself out.

Love and hugs

Becki and 7 systemic

[Guest guest]

,

The sugar could be up or down causing it. Thinking back did get

diagnosed with low blood sugar. She fought with it until the Dr did the test.

Now we have a Blood Sugar Monitor we check it when she needs it checked.

These come in handy though just to be on the safe side. Does Aundrea get sick

at

her stomach? This was on of the symtoms has along with the Dizziness

and short of breathe. Vertigo also will make you like that to. Or a inner ear

infection so you can rule out this as you go. cut out more foods

that made her feel worse. Low iron will also cause it. Does Diabetes run in the

Family? Diabetes is also a Immune System problems too.

Robbin

[Guest guest]

Not sure about her blood sugar level. He didn't test that. I will

get her checked out though if it continues.

Thanks,

(Aundrea 10 systemic jra)-

-- In , deerhuntert6@... wrote:

>

> Good news - I needed to hear it. I know your family did too. Hope

things

> for Aundrea gets better soon. How is her blood sugar? I am

hyperglycemic and

> I have some of the same symptoms. Sandi Ken Hunter (7 Systemic)

>

>

>

[Guest guest]

Good news!! (n, 17 systemic)

On Jun 23, 2006, at 3:45 PM, sonia1md wrote:

> Hello everyone,

>

> Aundrea had her appt with the rheumy today. Overall, I will say

> things went wonderful. Her labs were perfect. She doesn't have

> Lupus! He is staying with the systemic jra diagnosis. He thinks

> she is dealing with a flare but is satisfied with her physical

> condition to the point where he thinks we can just wait and see if

> she improves or worsens...Naturally, if she worsens then we restart

> meds.

>

> He doesn't know why she is having dizzy spells and shortness of

> breath and increased fatigue. He doesn't think that its related to

> her jra. He said if that persists then we need to take her to her

> primary doc and go from there.

>

> I was very relieved that she doesn't have lupus and encouraged by

> her the good labs...Even her ANA which has been 1:320 and 1:640

> speckled was actually negative! Can you believe that. He said that

> its not a gauge as to how her disease is progressing but its still a

> good thing.

>

> So the clear answer is she doesn't have lupus the uncertainty is

> what is causing the new symptoms...hopefully they will just burn out

> quickly.

>

> P.S. Aundrea still didn't give much a report to the dr. He asked

> how she was and she said fine. Then she looked at me and waited for

> me to fill in the rest. So much for our big talk about her letting

> the dr. know whats going on..., I will just have to trust ya on

> this one and believe that it will eventually get better...Seems like

> Rob is at least starting to get a little more proactive during his

> visits!

>

> Thanks everyone for your prayers and words of encouragement.

>

> (Aundrea 10 systemic jra)

>

>

>

[Guest guest]

Great news ! ) I have low blood sugar too, perhaps that's why

I get dizzy sometimes? I know I get really irratable if I go too

long without eating and sometimes get headaches too. Of course,

years ago when I told my dr. I thought I was hypoglycemic he just

told me to eat small meals every few hours and that was that.

Blessings,

& (11-poly)

(8), Caity (4)

's JRA Page: http://www.caringbridge.org/mn/palexander/

JRA Webring: http://d.webring.com/hub?ring=kidslivingwithar

I GoodSearch for The Arthritis Foundation North/Central Chapter!

Raise money for your favorite charity or school just by searching

the Internet with GoodSearch - www.goodsearch.com - powered by

>

> ,

> The sugar could be up or down causing it. Thinking back

did get

> diagnosed with low blood sugar. She fought with it until the Dr

did the test.

> Now we have a Blood Sugar Monitor we check it when she needs it

checked.

> These come in handy though just to be on the safe side. Does

Aundrea get sick at

> her stomach? This was on of the symtoms has along with

the Dizziness

> and short of breathe. Vertigo also will make you like that to. Or

a inner ear

> infection so you can rule out this as you go. cut out

more foods

> that made her feel worse. Low iron will also cause it. Does

Diabetes run in the

> Family? Diabetes is also a Immune System problems too.

> Robbin

>

>

>

[Guest guest]

- at times I worry that we have over looked something - and maybe she

has something in conjunction with the Systemic - we are just trying to take it

day by day - and the last few days have been good ones. Have a good

weekend - Sandi Ken and Hunter (7 Systemic)

[Guest guest]

I feel like I am walking on cloud 9 today. I didn't realize how

anxious I had become regarding the possible lupus diagnosis over

these past few days...I think the matter of rethinking aundrea's

diagnosis is finally settled...She may not be typical systemic but

it has been confirmed by enough doctors and over a long enough

period of time that I doubt it will get questioned anymore.

I will keep an eye on the hyperglycemic thing and see if it comes on

when she is overhungry...When she had it at Walmart I did go and get

her some food, but she barely picked at it..

Thanks everyone for being with me thru the past two weeks...You guys

are my rock and the best sounding board in the world.

God Bless,

(Aundrea 10 systemic jra)

-- In , " " <earthmama2k@...> wrote:

>

> Great news ! ) I have low blood sugar too, perhaps that's

why

> I get dizzy sometimes? I know I get really irratable if I go too

> long without eating and sometimes get headaches too. Of course,

> years ago when I told my dr. I thought I was hypoglycemic he just

> told me to eat small meals every few hours and that was that.

>

> Blessings,

>

> & (11-poly)

> (8), Caity (4)

> 's JRA Page: http://www.caringbridge.org/mn/palexander/

> JRA Webring: http://d.webring.com/hub?ring=kidslivingwithar

>

> I GoodSearch for The Arthritis Foundation North/Central Chapter!

>

> Raise money for your favorite charity or school just by searching

> the Internet with GoodSearch - www.goodsearch.com - powered by

>

>

>

> >

> > ,

> > The sugar could be up or down causing it. Thinking back

> did get

> > diagnosed with low blood sugar. She fought with it until the Dr

> did the test.

> > Now we have a Blood Sugar Monitor we check it when she needs it

> checked.

> > These come in handy though just to be on the safe side. Does

> Aundrea get sick at

> > her stomach? This was on of the symtoms has along with

> the Dizziness

> > and short of breathe. Vertigo also will make you like that to.

Or

> a inner ear

> > infection so you can rule out this as you go. cut out

> more foods

> > that made her feel worse. Low iron will also cause it. Does

> Diabetes run in the

> > Family? Diabetes is also a Immune System problems too.

> > Robbin

> >

> >

> >

[Guest guest]

Hi :

Glad to hear that Aundrea does not have Lupus. A huge weight off your

shoulders, I am sure. I hope the new symptoms clear themselves out and she

doesn't require restarting meds.

Take care.

Patty

[Guest guest]

- it is little things that occur with Hunter that when I mention it to

her doctors they just shrug their shoulders and shake their heads because

they don't have the answers. One of the things is night sweats - this usually

occurs when it is really cold outside or when the tempature is changing

(storm fronts). When we are outside in the sun to much then at night Hunter

will experience muscle twitches. These twitches will last for the first few

hours she sleeps. She will also at different times experience unusually

bruising. Not all the time though. I use to really worry about these things

- but

she is gaining weight - and so far her labs haven't been to bad in the last

year - although we had labs done this week - cause she is flaring. Her

height is great and she does really well in school. So I have come to live

with

the " oddities " and just hope and pray they are not a signal of worse things

to come. With Hunter flaring this week I have spent a lot of time on the

computer - I think we are going out to see the movie " Cars " tomorrow. Hunter

is

doing better - although the steriod makes her so pale. Sandi Ken Hunter (7

Systemic)

[Guest guest]

Hi ,

I am glad that you are relieved. I know n was once tested for

lupus, too. She had the butterfly rash over her nose and cheeks.

We have pushed thru flares before without going on steroids. n

is like Aundrea and gets fatigued and dizzy. Her appetite is also

affected during these flares. Does Aundrea get headaches or sore

throats? I have learned that n isn't the textbook type of

systemic, but in reality, is there such a thing?

n is doing very well since her bout with MAS. She is now off of

the steroids. She is back on the mtx, but not the enbrel. Her

arthritis is under control, or at least I think so. She won't tell

me too much anymore-she is at that age. She is working four days a

week at her high school in the office. The high school has been

wonderful to her. She goes to a private high school, and they award

one scholarship a year out of 1100 students. She was awarded the

scholarship this year. We were very proud of her, especially after

all that she has been through. Take care, (n, 17, systemic)

On Jun 24, 2006, at 10:27 AM, sonia1md wrote:

>

> I feel like I am walking on cloud 9 today. I didn't realize how

> anxious I had become regarding the possible lupus diagnosis over

> these past few days...I think the matter of rethinking aundrea's

> diagnosis is finally settled...She may not be typical systemic but

> it has been confirmed by enough doctors and over a long enough

> period of time that I doubt it will get questioned anymore.

>

> I will keep an eye on the hyperglycemic thing and see if it comes on

> when she is overhungry...When she had it at Walmart I did go and get

> her some food, but she barely picked at it..

>

> Thanks everyone for being with me thru the past two weeks...You guys

> are my rock and the best sounding board in the world.

>

> God Bless,

> (Aundrea 10 systemic jra)

>

> -- In , " " <earthmama2k@...> wrote:

> >

> > Great news ! ) I have low blood sugar too, perhaps that's

> why

> > I get dizzy sometimes? I know I get really irratable if I go too

> > long without eating and sometimes get headaches too. Of course,

> > years ago when I told my dr. I thought I was hypoglycemic he just

> > told me to eat small meals every few hours and that was that.

> >

> > Blessings,

> >

> > & (11-poly)

> > (8), Caity (4)

> > 's JRA Page: http://www.caringbridge.org/mn/palexander/

> > JRA Webring: http://d.webring.com/hub?ring=kidslivingwithar

> >

> > I GoodSearch for The Arthritis Foundation North/Central Chapter!

> >

> > Raise money for your favorite charity or school just by searching

> > the Internet with GoodSearch - www.goodsearch.com - powered by

> >

> >

> >

> > >

> > > ,

> > > The sugar could be up or down causing it. Thinking back

> > did get

> > > diagnosed with low blood sugar. She fought with it until the Dr

> > did the test.

> > > Now we have a Blood Sugar Monitor we check it when she needs it

> > checked.

> > > These come in handy though just to be on the safe side. Does

> > Aundrea get sick at

> > > her stomach? This was on of the symtoms has along with

> > the Dizziness

> > > and short of breathe. Vertigo also will make you like that to.

> Or

> > a inner ear

> > > infection so you can rule out this as you go. cut out

> > more foods

> > > that made her feel worse. Low iron will also cause it. Does

> > Diabetes run in the

> > > Family? Diabetes is also a Immune System problems too.

> > > Robbin

> > >

> > >

> > >

[Guest guest]

Hi Sandi. Hunter doesn't have swollen lymph nodes does she, along with the

night sweats? Just checking. Kim

In a message dated 6/24/2006 8:24:21 PM Central Standard Time,

deerhuntert6@... writes:

it is little things that occur with Hunter that when I mention it to

her doctors they just shrug their shoulders and shake their heads because

they don't have the answers. One of the things is night sweats - this usually

occurs when it is really cold outside or when the tempature is changing

(storm fronts).

[Guest guest]

Hi ,

Aundrea does continue to mimic n as far as symptoms go. She

had the butterfly rash again this afternoon and her only exposure to

the sun was thru the car window.

Aundrea doesn't really get headaches to often but when her flares

are severe she almost always has a sore throat...Recently she has

been complaining of low back pain. Not sure if this is related to

jra or not. Naturally she is adjusted regularly given that my

husband is a chriopractor but yet the low back pain seems to be

persisting right now along with the bouts of dizziness and

occasionally shortness of breath.

Most of the time she looks pretty good other than needing more rest

and definately increased irritability/sensitivity...Could just be

the onset of puberty though! :-)

That is so awesome that n was awarded the scholarship. You

have every reason to be proud of that girl! She is a strong fighter

and nothing can keep her down for long.

Are you still coping ok in the aftermath of what you went thru with

her?

P.S. Maybe our girls are just setting the standard of the atypical

systemic...I am sure it will come in handy for other folks who

undoubtedly will go thru the same thing.

God Bless,

(Aundrea 10 systemic)-

-- In , Price <bc.price@...> wrote:

>

> Hi ,

>

> I am glad that you are relieved. I know n was once tested

for

> lupus, too. She had the butterfly rash over her nose and cheeks.

>

> We have pushed thru flares before without going on steroids.

n

> is like Aundrea and gets fatigued and dizzy. Her appetite is

also

> affected during these flares. Does Aundrea get headaches or sore

> throats? I have learned that n isn't the textbook type of

> systemic, but in reality, is there such a thing?

>

> n is doing very well since her bout with MAS. She is now off

of

> the steroids. She is back on the mtx, but not the enbrel. Her

> arthritis is under control, or at least I think so. She won't

tell

> me too much anymore-she is at that age. She is working four days

a

> week at her high school in the office. The high school has been

> wonderful to her. She goes to a private high school, and they

award

> one scholarship a year out of 1100 students. She was awarded the

> scholarship this year. We were very proud of her, especially

after

> all that she has been through. Take care, (n, 17,

systemic)

>

>

> On Jun 24, 2006, at 10:27 AM, sonia1md wrote:

>

> >

> > I feel like I am walking on cloud 9 today. I didn't realize how

> > anxious I had become regarding the possible lupus diagnosis over

> > these past few days...I think the matter of rethinking aundrea's

> > diagnosis is finally settled...She may not be typical systemic

but

> > it has been confirmed by enough doctors and over a long enough

> > period of time that I doubt it will get questioned anymore.

> >

> > I will keep an eye on the hyperglycemic thing and see if it

comes on

> > when she is overhungry...When she had it at Walmart I did go and

get

> > her some food, but she barely picked at it..

> >

> > Thanks everyone for being with me thru the past two weeks...You

guys

> > are my rock and the best sounding board in the world.

> >

> > God Bless,

> > (Aundrea 10 systemic jra)

> >

> > -- In , " " <earthmama2k@> wrote:

> > >

> > > Great news ! ) I have low blood sugar too, perhaps

that's

> > why

> > > I get dizzy sometimes? I know I get really irratable if I go

too

> > > long without eating and sometimes get headaches too. Of course,

> > > years ago when I told my dr. I thought I was hypoglycemic he

just

> > > told me to eat small meals every few hours and that was that.

> > >

> > > Blessings,

> > >

> > > & (11-poly)

> > > (8), Caity (4)

> > > 's JRA Page: http://www.caringbridge.org/mn/palexander/

> > > JRA Webring: http://d.webring.com/hub?ring=kidslivingwithar

> > >

> > > I GoodSearch for The Arthritis Foundation North/Central

Chapter!

> > >

> > > Raise money for your favorite charity or school just by

searching

> > > the Internet with GoodSearch - www.goodsearch.com - powered by

> > >

> > >

> > >

> > > >

> > > > ,

> > > > The sugar could be up or down causing it. Thinking back

> > > did get

> > > > diagnosed with low blood sugar. She fought with it until the

Dr

> > > did the test.

> > > > Now we have a Blood Sugar Monitor we check it when she needs

it

> > > checked.

> > > > These come in handy though just to be on the safe side. Does

> > > Aundrea get sick at

> > > > her stomach? This was on of the symtoms has along

with

> > > the Dizziness

> > > > and short of breathe. Vertigo also will make you like that

to.

> > Or

> > > a inner ear

> > > > infection so you can rule out this as you go. cut out

> > > more foods

> > > > that made her feel worse. Low iron will also cause it. Does

> > > Diabetes run in the

> > > > Family? Diabetes is also a Immune System problems too.

> > > > Robbin

> > > >

> > > >

> > > >

[Guest guest]

Sandi,

Did they rule out other diseases with Hunter? What is happening

that is making you consider that there could be something else going

one?

So glad to hear that Hunter is feeling a bit better. I hope and

pray that things continue to improve!

(drea 10 systemic)

-

-- In , deerhuntert6@... wrote:

>

> - at times I worry that we have over looked something - and

maybe she

> has something in conjunction with the Systemic - we are just

trying to take it

> day by day - and the last few days have been good ones. Have a

good

> weekend - Sandi Ken and Hunter (7 Systemic)

>

>

>

[Guest guest]

Hi

I am trying to get al little caught up on my posts - I have been reading about

Aundrea's symptoms and praying for her. I am so pleased at the outcome of your

appt. I too get hypoglycemic - it happens most often for me a couple of hours

after a meal (more frequently breakfast for me) and I have had something with a

sugar content (this includes fruit - can't have you thinking I'm eating donuts

for bf - though I often have a pb & j) - anyway - the meal causes the blood sugar

to rise, and an hour or two after the meal it will drop suddenly and I get

dizzy. So, if these symptoms continue, maybe a food diary and journally the

time of meals and time the dizziness occurs may be helpful. Hopefully, she

will be feeling better again soon!!

Val

Rob's Mom(8,systemic)

rheumy appt. with aundrea

Hello everyone,

Aundrea had her appt with the rheumy today. Overall, I will say

things went wonderful. Her labs were perfect. She doesn't have

Lupus! He is staying with the systemic jra diagnosis. He thinks

she is dealing with a flare but is satisfied with her physical

condition to the point where he thinks we can just wait and see if

she improves or worsens...Naturally, if she worsens then we restart

meds.

He doesn't know why she is having dizzy spells and shortness of

breath and increased fatigue. He doesn't think that its related to

her jra. He said if that persists then we need to take her to her

primary doc and go from there.

I was very relieved that she doesn't have lupus and encouraged by

her the good labs...Even her ANA which has been 1:320 and 1:640

speckled was actually negative! Can you believe that. He said that

its not a gauge as to how her disease is progressing but its still a

good thing.

So the clear answer is she doesn't have lupus the uncertainty is

what is causing the new symptoms...hopefully they will just burn out

quickly.

P.S. Aundrea still didn't give much a report to the dr. He asked

how she was and she said fine. Then she looked at me and waited for

me to fill in the rest. So much for our big talk about her letting

the dr. know whats going on..., I will just have to trust ya on

this one and believe that it will eventually get better...Seems like

Rob is at least starting to get a little more proactive during his

visits!

Thanks everyone for your prayers and words of encouragement.

(Aundrea 10 systemic jra)

________________________________________________________________________

Check out AOL.com today. Breaking news, video search, pictures, email and IM.

All on demand. Always Free.

[Guest guest]

Hi Val,

I think your right about trying to see if I can find a pattern to

whats causing the dizziness. She had it again tonight. She had

just had some pudding and a couple hours prior to that she had a

hambuger.

I don't see any correlation yet but I have told her to keep letting

me know when the dizziness comes on and how long it lasts. I will

give it a couple more weeks and if it continues then I will take her

to the primary doc.

Aundrea seems a bit better with her joints these past couple of

days. She is getting the rash quite a bit, and more joint pain in

her fingers and ankles..but no swelling so thats good.

P.S. did you have to do anything to control your dizziness other

than watching your diet?

sonia (aundrea 10 systemic jra)-

-- In , carneyval@... wrote:

>

> Hi

> I am trying to get al little caught up on my posts - I have been

reading about Aundrea's symptoms and praying for her. I am so

pleased at the outcome of your appt. I too get hypoglycemic - it

happens most often for me a couple of hours after a meal (more

frequently breakfast for me) and I have had something with a sugar

content (this includes fruit - can't have you thinking I'm eating

donuts for bf - though I often have a pb & j) - anyway - the meal

causes the blood sugar to rise, and an hour or two after the meal it

will drop suddenly and I get dizzy. So, if these symptoms continue,

maybe a food diary and journally the time of meals and time the

dizziness occurs may be helpful. Hopefully, she will be feeling

better again soon!!

>

> Val

> Rob's Mom(8,systemic)

>

> rheumy appt. with aundrea

>

>

> Hello everyone,

>

> Aundrea had her appt with the rheumy today. Overall, I will say

> things went wonderful. Her labs were perfect. She doesn't have

> Lupus! He is staying with the systemic jra diagnosis. He thinks

> she is dealing with a flare but is satisfied with her physical

> condition to the point where he thinks we can just wait and see if

> she improves or worsens...Naturally, if she worsens then we

restart

> meds.

>

> He doesn't know why she is having dizzy spells and shortness of

> breath and increased fatigue. He doesn't think that its related to

> her jra. He said if that persists then we need to take her to her

> primary doc and go from there.

>

> I was very relieved that she doesn't have lupus and encouraged by

> her the good labs...Even her ANA which has been 1:320 and 1:640

> speckled was actually negative! Can you believe that. He said that

> its not a gauge as to how her disease is progressing but its still

a

> good thing.

>

> So the clear answer is she doesn't have lupus the uncertainty is

> what is causing the new symptoms...hopefully they will just burn

out

> quickly.

>

> P.S. Aundrea still didn't give much a report to the dr. He asked

> how she was and she said fine. Then she looked at me and waited

for

> me to fill in the rest. So much for our big talk about her letting

> the dr. know whats going on..., I will just have to trust ya

on

> this one and believe that it will eventually get better...Seems

like

> Rob is at least starting to get a little more proactive during his

> visits!

>

> Thanks everyone for your prayers and words of encouragement.

>

> (Aundrea 10 systemic jra)

>

>

>

>

_____________________________________________________________________

___

> Check out AOL.com today. Breaking news, video search, pictures,

email and IM. All on demand. Always Free.

>

>

>

[Guest guest]

Hi ,

I hope that the dizziness turns out to be nothing. I am glad to hear that

Aundrea's joints are doing better, wishing all the joint pain and that

bothersome rash would just go away! As for me & my dizziness, I never talked to

the doctor about it, (at least not recently - I did 10 or 12 years ago, my labs

were ok, so he said don't worry about it) but found on my own if I balance my

protein with my carbs/veggies and fruits/sugars, etc in the meal that it didn't

occur as often - it's only happened once in the last few months & I was rushing

and had a cereal bar for breakfast. I only eat breakfast about 1/2 of the time

- (I know, I know) - spend more time in the am getting 's breakfast,

fixing his lunch, meds and getting us out the door. But, oddly enough, it

rarely occurs when I don't eat breakfast. Well, I'd better get back to work!

val

Rob's Mom (8,systemic)

rheumy appt. with aundrea

>

>

> Hello everyone,

>

> Aundrea had her appt with the rheumy today. Overall, I will say

> things went wonderful. Her labs were perfect. She doesn't have

> Lupus! He is staying with the systemic jra diagnosis. He thinks

> she is dealing with a flare but is satisfied with her physical

> condition to the point where he thinks we can just wait and see if

> she improves or worsens...Naturally, if she worsens then we

restart

> meds.

>

> He doesn't know why she is having dizzy spells and shortness of

> breath and increased fatigue. He doesn't think that its related to

> her jra. He said if that persists then we need to take her to her

> primary doc and go from there.

>

> I was very relieved that she doesn't have lupus and encouraged by

> her the good labs...Even her ANA which has been 1:320 and 1:640

> speckled was actually negative! Can you believe that. He said that

> its not a gauge as to how her disease is progressing but its still

a

> good thing.

>

> So the clear answer is she doesn't have lupus the uncertainty is

> what is causing the new symptoms...hopefully they will just burn

out

> quickly.

>

> P.S. Aundrea still didn't give much a report to the dr. He asked

> how she was and she said fine. Then she looked at me and waited

for

> me to fill in the rest. So much for our big talk about her letting

> the dr. know whats going on..., I will just have to trust ya

on

> this one and believe that it will eventually get better...Seems

like

> Rob is at least starting to get a little more proactive during his

> visits!

>

> Thanks everyone for your prayers and words of encouragement.

>

> (Aundrea 10 systemic jra)

>

>

>

>

__________________________________________________________

___

> Check out AOL.com today. Breaking news, video search, pictures,

email and IM. All on demand. Always Free.

>

>

>