Re: Introducing myself...

[Guest guest]

Hi ,

See our miracle just after 3 months.....He is Ben Sponagle in the

photo section....

These are not even the final pictures. Our orthotist is still hoping

for more improvement. He estaimates 80 percent already....8 weeks

only to go........Best decision we EVER made........so I am positive

you are doing the right thing!!!!

The Sponagle's in Canada.

> > > Natasha,

> > >

> > > Coincidentally, my little JD had the exact same measurements as

> > Aidan. We'

> > > ve decided to go forward with the helmet because of JD's age.he

> > keeps trying

> > > to move out of the stretches and he keeps moving to his

position of

> > comfort

> > > and laying on his flat spot at night and naptimes, despite

constant

> > efforts

> > > to reposition. We've decided that the helmet is the only way

to

> > get him off

> > > of that flat spot and position his head towards the good

side. JD

> > was

> > > measured last Wednesday and we're scheduled to get it at the

end of

> > the

> > > week.

> > >

> > > Our orthotist told us that his measurements placed him between

the

> > mild and

> > > moderate plagio category. We were also told he would need the

> > helmet for

> > > 4-6 months. Of course, every case is different based up

> > measurements, age,

> > > mobility, etc.

> > >

> > > Good luck in your decision. You're already on the right track

by

> > gathering

> > > all this information:-)

> > >

> > > Hugs,

> > >

> > >

> > >

> > >

> > >

> > >

> > > measurements

> > >

> > > Aidan had his measurements for preauthorization at CT today in

> > > Atlanta. Still not sure if I am going forward or not with

this but

> > > just in case..... Anyway, his ear misalignment was 8 mm and

head

> > > asymmetry was 13 mm. Just wondering about other plagio babies

> > > measurements.... Thanks, Natasha

> > >

> > > PS I posted this on the positional plagio board too so I

apologize

> > > for any duplicates

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi, Barbara. So sorry about your troubles.

Have you ever seen a rheumatologist? I think it would be worth it.

Plenty of RA patients are negative for rheumatoid factor (RF), but if

RF, anti-CCP, ESR ( " sed rate " ), and CRP are all negative, especially

over many years, an RA diagnosis is harder to make or justify.

Did anyone ever order any kind of imaging of your hands and/or feet?

MRIs are very expensive, but they can provide a lot of valuable

information.

Not an MD

On Fri, Jan 15, 2010 at 12:41 PM, mydogrunsmyhouse <bj_clegg@...> wrote:

> Hello everyone!  It's very nice to meet you all!  I'll admit that I've been

" lurking " for a couple of months just trying to get the feel of the group.  Wow

is all I can say. Y'all are amazing!  You're so supportive and positive all the

time, and everyone is so helpful and giving of their time and advice.  I hope

I'll be able to add something to the mix the same way!

>

> My history is like alot of you... I've had random pain for over 23 years and

was always told I had rheumatoid arthritis - UNTIL the blood tests came back

negative.  Then it was strains, sprains, tendonitis, fibromyalgia, etc.  I was

given steroids and pain killers (which helped greatly) then the pain would

subside and the dr. would say " I was right " and send me on... until the next

round which was every 6 - to 12 months or so and usually in a different place.

>

> This year I saw my doctor and the same thing happened.  He said rheumatoid

until the blood tests came back, but then he said " well, I still think it's

rheumatoid so let's put you on steroids " .  They helped a little, but not as much

as usual.  So I went back, and he looked at his records, and said " well, not

rheumatoid because your tests were negative " .! I reminded him of what he said,

and that the steroids helped a little, but now I was in extreme agony in my

hands and wrists and unable to work anymore because of it.  He then said I had

deQuervain's tendonitis and would have to see a hand specialist. (sigh)

>

> I don't have insurance, and I support 2 kids and a disabled husband.  So if

I'm going to have to spend big money for a doctor, what do you all think about

spending it on a rheumatologist instead of a hand specialist?  See, usually the

first symptom I have is debilitating fatigue - I fall asleep at work, on the way

home, in the mornings, etc.  It's awful and no matter how many hours I do sleep

I feel the same way.  After a week or so of that then the stiffness starts in

along with moderate pain.  But at the midpoint I become so stiff I can't do

anything for myself for about 2-3 days.  Then it starts to go away.  The whole

process lasts from 1 months to 3 months and then I'm left with a little residual

pain and stiffness from then on, but always in different areas.  This time it

started as usual, but my right knee, left shoulder, left hip, both wrists and

both thumbs and 1st 3 fingers were affected.  When I would get on the floor on

my knee, it literally felt like my skin was being ripped apart!  After I would

get off of it it would be red and swollen for hours.

>

> Please don't misunderstand me - I don't have Munchhausen's disease and I

really don't want rheumatoid arthritis! I have 3 aunt's who lived with different

states of disability from it and I've seen what it can do at it's worst - I'm

terrified of it.  I just don't know which direction to go.  I think the hand

specialist would be a waste of time because I seem to have trouble all over -

although not all at once.

>

> Any advice would be really appreciated.  Thank you!

>

> Barbara

[Guest guest]

Barbara,

My advice would be to go on to a rheumatologist. They are better

equipped to diagnose these autoimmune diseases, and sometimes it's

hard even for them, especially if all of the indicators are negative.

My daughter-in-law has been having pain, especially in her feet, and

is having knots pop up on her hands and feet. She went to her PCP, who

ordered the appropriate blood work. Everything was normal or negative,

but he did think she should see a rheumatologist. She has an aunt who

has lupus. I hope she doesn't have lupus or RA, but it's obvious that

something is going on with her.

Sue

On Jan 15, 2010, at 1:41 PM, mydogrunsmyhouse wrote:

> Please don't misunderstand me - I don't have Munchhausen's disease

> and I really don't want rheumatoid arthritis! I have 3 aunt's who

> lived with different states of disability from it and I've seen what

> it can do at it's worst - I'm terrified of it. I just don't know

> which direction to go. I think the hand specialist would be a waste

> of time because I seem to have trouble all over - although not all

> at once.

>

> Any advice would be really appreciated. Thank you!

[Guest guest]

Hi Barbara -

 

I've been through several RA doc's AND I just happen to have an orthopeadic

surgeon (for my shoulders). I finally found a RA doc---his bedside manner

reminds me of Dr. House!!--- BUT he did new x-rays of my hands & feet & neck.

I've been on Rituxan for the RA and it is now in remission. My bloodwork comes

back as RA negative now. But I was continuing to have severe pain in the areas

listed above. The x-rays came back with me having Osteoarthritis in my feet and

a degenerative arthritis in my neck. I'm 47 & was diagnosed with RA close to 7

yrs ago. He is sending me to a neurologist though for pain in my wrists and

hands to see what is the cause of it - if it is carpel tunnel, then I will have

to have surgery.

 

First, how big of a town do you live in?  I would ask your doctor to do x-rays

of the areas you are in pain. If he has done so already, I would pose this

question - is this " hand " specialist an ortho doc? Just from bad experience from

a couple of docs, the way I look at this mess is you have to be comfortable with

how well your doc listens to you. Kinda sounds like he is not listening to the

whole picture (from what you've said). Nothing is wrong with getting a copy of

your records from his doctor office and finding a doc that WILL listen to you.

Just my 2cents worth!!  Please keep the group posted on your progress!

 

in SC

From: mydogrunsmyhouse <bj_clegg@...>

Subject: [ ] Introducing myself...

Date: Friday, January 15, 2010, 1:41 PM

 

Hello everyone! It's very nice to meet you all! I'll admit that I've been

" lurking " for a couple of months just trying to get the feel of the group. Wow

is all I can say. Y'all are amazing! You're so supportive and positive all the

time, and everyone is so helpful and giving of their time and advice.. I hope

I'll be able to add something to the mix the same way!

My history is like alot of you... I've had random pain for over 23 years and was

always told I had rheumatoid arthritis - UNTIL the blood tests came back

negative. Then it was strains, sprains, tendonitis, fibromyalgia, etc. I was

given steroids and pain killers (which helped greatly) then the pain would

subside and the dr. would say " I was right " and send me on... until the next

round which was every 6 - to 12 months or so and usually in a different place.

This year I saw my doctor and the same thing happened. He said rheumatoid until

the blood tests came back, but then he said " well, I still think it's rheumatoid

so let's put you on steroids " . They helped a little, but not as much as usual.

So I went back, and he looked at his records, and said " well, not rheumatoid

because your tests were negative " .! I reminded him of what he said, and that the

steroids helped a little, but now I was in extreme agony in my hands and wrists

and unable to work anymore because of it. He then said I had deQuervain's

tendonitis and would have to see a hand specialist. (sigh)

I don't have insurance, and I support 2 kids and a disabled husband. So if I'm

going to have to spend big money for a doctor, what do you all think about

spending it on a rheumatologist instead of a hand specialist? See, usually the

first symptom I have is debilitating fatigue - I fall asleep at work, on the way

home, in the mornings, etc. It's awful and no matter how many hours I do sleep I

feel the same way. After a week or so of that then the stiffness starts in along

with moderate pain. But at the midpoint I become so stiff I can't do anything

for myself for about 2-3 days. Then it starts to go away. The whole process

lasts from 1 months to 3 months and then I'm left with a little residual pain

and stiffness from then on, but always in different areas. This time it started

as usual, but my right knee, left shoulder, left hip, both wrists and both

thumbs and 1st 3 fingers were affected. When I would get on the floor on my

knee, it literally felt like

my skin was being ripped apart! After I would get off of it it would be red and

swollen for hours.

Please don't misunderstand me - I don't have Munchhausen' s disease and I really

don't want rheumatoid arthritis! I have 3 aunt's who lived with different states

of disability from it and I've seen what it can do at it's worst - I'm terrified

of it. I just don't know which direction to go. I think the hand specialist

would be a waste of time because I seem to have trouble all over - although not

all at once.

Any advice would be really appreciated. Thank you!

Barbara

[Guest guest]

Hi Barbara and welcome to the group!! I feel your pain and pray they can get to

the bottom of it quickly. I've walked in your shoes and I know how uncomfortable

and painful it is! I have sero-negative RA. But, RA it is. I also have

Fibromyalgia and from what I've read, its common to have both at the same time.

IMHO, I would skip the hand doctor for the time being and go straight to a

Rheumatologist. I think you'll get better answers rather than piecemeal

diagnosis'. AND if the Rheumy thinks you need the hand doctor or any other

specialist besides himself, he can send you on from there, too. I know how

expensive all of this can be as I don't have insurance either.

I remember those early days and, I too, would find myself falling asleep at the

wheel in the mornings on my way to work. That was the scariest thing and amongst

the final straws for me to quit working. The pain, the fatigue, the stress of my

workplace (not to mention just being a woman, wife and mother) - I couldn't

handle it anymore. I don't recommend this for everyone (quitting job), but for

me it eased some of the stress and I could focus on my health - although it got

worse before it started to get better - and these days I'm on the downside of

worse again. BUT - welcome to the world of RA.

I don't mean to be negative. Our hopes are to have this RA go into remission so

we can have our lives back again. I don't think any of us ever give up on that

dream. I wish you the best of luck in getting to the bottom of your pain. Don't

give up! Keep on, keeping on and let us know how you're doing - we all care.....

Doreen

Hello everyone! It's very nice to meet you all! I'll admit that I've been

" lurking " for a couple of months just trying to get the feel of the group. Wow

is all I can say. Y'all are amazing! You're so supportive and positive all the

time, and everyone is so helpful and giving of their time and advice. I hope

I'll be able to add something to the mix the same way!

My history is like alot of you... I've had random pain for over 23 years and

was always told I had rheumatoid arthritis - UNTIL the blood tests came back

negative. Then it was strains, sprains, tendonitis, fibromyalgia, etc. I was

given steroids and pain killers (which helped greatly) then the pain would

subside and the dr. would say " I was right " and send me on... until the next

round which was every 6 - to 12 months or so and usually in a different place.

This year I saw my doctor and the same thing happened. He said rheumatoid

until the blood tests came back, but then he said " well, I still think it's

rheumatoid so let's put you on steroids " . They helped a little, but not as much

as usual. So I went back, and he looked at his records, and said " well, not

rheumatoid because your tests were negative " .! I reminded him of what he said,

and that the steroids helped a little, but now I was in extreme agony in my

hands and wrists and unable to work anymore because of it. He then said I had

deQuervain's tendonitis and would have to see a hand specialist. (sigh)

I don't have insurance, and I support 2 kids and a disabled husband. So if I'm

going to have to spend big money for a doctor, what do you all think about

spending it on a rheumatologist instead of a hand specialist? See, usually the

first symptom I have is debilitating fatigue - I fall asleep at work, on the way

home, in the mornings, etc. It's awful and no matter how many hours I do sleep

I feel the same way. After a week or so of that then the stiffness starts in

along with moderate pain. But at the midpoint I become so stiff I can't do

anything for myself for about 2-3 days. Then it starts to go away. The whole

process lasts from 1 months to 3 months and then I'm left with a little residual

pain and stiffness from then on, but always in different areas. This time it

started as usual, but my right knee, left shoulder, left hip, both wrists and

both thumbs and 1st 3 fingers were affected. When I would get on the floor on

my knee, it literally felt like my skin was being ripped apart! After I would

get off of it it would be red and swollen for hours.

Please don't misunderstand me - I don't have Munchhausen's disease and I really

don't want rheumatoid arthritis! I have 3 aunt's who lived with different states

of disability from it and I've seen what it can do at it's worst - I'm terrified

of it. I just don't know which direction to go. I think the hand specialist

would be a waste of time because I seem to have trouble all over - although not

all at once.

Any advice would be really appreciated. Thank you!

Barbara

[Guest guest]

Barbara welcome to the group. I agree with Doreen, the rheumy first.

When I had trouble with my hands and saw the dr for my hands, he gave me a

stronger NSAID. I did later have to have surgery for Carpal Tunnel.

Hopefully the rheumy can give you something that will help.

Doreen, Sorry to hear you are not doing well. I had been wondering how you were

doing on the antibotic and hoping it was working for you.

Hope you both feel better soon.

>

> Hello everyone! It's very nice to meet you all! I'll admit that I've been

" lurking " for a couple of months just trying to get the feel of the group. Wow

is all I can say. Y'all are amazing! You're so supportive and positive all the

time, and everyone is so helpful and giving of their time and advice. I hope

I'll be able to add something to the mix the same way!

>

> My history is like alot of you... I've had random pain for over 23 years and

was always told I had rheumatoid arthritis - UNTIL the blood tests came back

negative. Then it was strains, sprains, tendonitis, fibromyalgia, etc. I was

given steroids and pain killers (which helped greatly) then the pain would

subside and the dr. would say " I was right " and send me on... until the next

round which was every 6 - to 12 months or so and usually in a different place.

>

> This year I saw my doctor and the same thing happened. He said rheumatoid

until the blood tests came back, but then he said " well, I still think it's

rheumatoid so let's put you on steroids " . They helped a little, but not as much

as usual. So I went back, and he looked at his records, and said " well, not

rheumatoid because your tests were negative " .! I reminded him of what he said,

and that the steroids helped a little, but now I was in extreme agony in my

hands and wrists and unable to work anymore because of it. He then said I had

deQuervain's tendonitis and would have to see a hand specialist. (sigh)

>

> I don't have insurance, and I support 2 kids and a disabled husband. So if

I'm going to have to spend big money for a doctor, what do you all think about

spending it on a rheumatologist instead of a hand specialist? See, usually the

first symptom I have is debilitating fatigue - I fall asleep at work, on the way

home, in the mornings, etc. It's awful and no matter how many hours I do sleep

I feel the same way. After a week or so of that then the stiffness starts in

along with moderate pain. But at the midpoint I become so stiff I can't do

anything for myself for about 2-3 days. Then it starts to go away. The whole

process lasts from 1 months to 3 months and then I'm left with a little residual

pain and stiffness from then on, but always in different areas. This time it

started as usual, but my right knee, left shoulder, left hip, both wrists and

both thumbs and 1st 3 fingers were affected. When I would get on the floor on

my knee, it literally felt like my skin was being ripped apart! After I would

get off of it it would be red and swollen for hours.

>

> Please don't misunderstand me - I don't have Munchhausen's disease and I

really don't want rheumatoid arthritis! I have 3 aunt's who lived with different

states of disability from it and I've seen what it can do at it's worst - I'm

terrified of it. I just don't know which direction to go. I think the hand

specialist would be a waste of time because I seem to have trouble all over -

although not all at once.

>

> Any advice would be really appreciated. Thank you!

>

> Barbara

>

[Guest guest]

Hi Barbara:

     Welcome to our wonderful group.  I so hope you take the advice and go

see a Rheumy.  I hope the Rheumy can help you and get you pain free.  A good

Rheumy will treat you with respect, listen to you, and foremost, give you RX's

for pain meds. so you can start to feel better.  If you do not like your

Rheumy, you owe it to yourself to search and find one that you love and has your

best interest at heart.

    I am glad you chose to join our group.  You did a good thing for

yourself.  I would be lost without everyone here.

    I hope you feel better soon, and that your pain lessens.  Take care of

yourself, and rest as often as you can.  It sure helps to do so.

    Again, welcome.

 

Hugs,

 

Barbara

From: ncwalker <ncwalker@...>

Subject: [ ] Re: Introducing myself...

Date: Sunday, January 17, 2010, 1:09 PM

 

Barbara welcome to the group. I agree with Doreen, the rheumy first.

When I had trouble with my hands and saw the dr for my hands, he gave me a

stronger NSAID. I did later have to have surgery for Carpal Tunnel. Hopefully

the rheumy can give you something that will help.

Doreen, Sorry to hear you are not doing well. I had been wondering how you were

doing on the antibotic and hoping it was working for you.

Hope you both feel better soon.

>

> Hello everyone! It's very nice to meet you all! I'll admit that I've been

" lurking " for a couple of months just trying to get the feel of the group. Wow

is all I can say. Y'all are amazing! You're so supportive and positive all the

time, and everyone is so helpful and giving of their time and advice. I hope

I'll be able to add something to the mix the same way!

>

> My history is like alot of you... I've had random pain for over 23 years and

was always told I had rheumatoid arthritis - UNTIL the blood tests came back

negative. Then it was strains, sprains, tendonitis, fibromyalgia, etc. I was

given steroids and pain killers (which helped greatly) then the pain would

subside and the dr. would say " I was right " and send me on... until the next

round which was every 6 - to 12 months or so and usually in a different place.

>

> This year I saw my doctor and the same thing happened. He said rheumatoid

until the blood tests came back, but then he said " well, I still think it's

rheumatoid so let's put you on steroids " . They helped a little, but not as much

as usual. So I went back, and he looked at his records, and said " well, not

rheumatoid because your tests were negative " .! I reminded him of what he said,

and that the steroids helped a little, but now I was in extreme agony in my

hands and wrists and unable to work anymore because of it. He then said I had

deQuervain's tendonitis and would have to see a hand specialist. (sigh)

>

> I don't have insurance, and I support 2 kids and a disabled husband. So if I'm

going to have to spend big money for a doctor, what do you all think about

spending it on a rheumatologist instead of a hand specialist? See, usually the

first symptom I have is debilitating fatigue - I fall asleep at work, on the way

home, in the mornings, etc. It's awful and no matter how many hours I do sleep I

feel the same way. After a week or so of that then the stiffness starts in along

with moderate pain. But at the midpoint I become so stiff I can't do anything

for myself for about 2-3 days. Then it starts to go away. The whole process

lasts from 1 months to 3 months and then I'm left with a little residual pain

and stiffness from then on, but always in different areas. This time it started

as usual, but my right knee, left shoulder, left hip, both wrists and both

thumbs and 1st 3 fingers were affected. When I would get on the floor on my

knee, it literally felt

like my skin was being ripped apart! After I would get off of it it would be

red and swollen for hours.

>

> Please don't misunderstand me - I don't have Munchhausen' s disease and I

really don't want rheumatoid arthritis! I have 3 aunt's who lived with different

states of disability from it and I've seen what it can do at it's worst - I'm

terrified of it. I just don't know which direction to go. I think the hand

specialist would be a waste of time because I seem to have trouble all over -

although not all at once.

>

> Any advice would be really appreciated. Thank you!

>

> Barbara

>