Re: New here....

[Guest guest]

What about the term " innoculation " ?

Or is that just British for immunisation?

> >Welcome

> >

> >

> >

> >And I just want to say something I read in one of my books about

the

> >words " immunization " and " vaccines " .. they're not interchangeable

and if

> >we don't refer to vaccines as immunizations it helps to not keep

> >enforcing the idea that vaccines do provide immunity…. See? I

can't

> >remember what book I read that in but I thought it was a very good

point

> >and I avoid using the term " immunization " .. b/c they aren't and

they

> >don't.

> >

> >

> >

> >I bet you'll like the group. Lots of good people here

> >

> >

> >

> >Nita, Mom to: 14, Jon 13, 10, 8, 6,

Christian

> >(7/16/03 to 8/22/04), 2 and Isaac, 2/308

> >Learn from the mistakes of others. Trust me... you can't live long

> >enough to make them all yourself.

> >

> >

> >

> >No virus found in this incoming message.

> >Checked by AVG.

> >Version: 7.5.519 / Virus Database: 269.21.7/1335 - Release Date:

> >3/19/2008 9:54 AM

> >

> >

> >

> >No virus found in this outgoing message.

> >Checked by AVG.

> >Version: 7.5.519 / Virus Database: 269.21.7/1335 - Release Date:

> >3/19/2008 9:54 AM

> >

> >

> >

> >

[Guest guest]

Hi April-

Welcome! And please don't feel guilty, it can happen to anyone. Even

to second time mom's who have already been through the process once

already. People have had success with just repositioning, it just

really depends on your level of commitment to it and the severity of

the flat spot. My son had tort and severe plagio and it did not

correct on his own. The one thing I can say for sure is physical

therapy is VERY IMPORTANT to correct the tort, which in turn will

help with the plagio. My son was in PT for about 2 months and his

neck stretches consumed my life (you have to do them 3-5 times a

day, besides taking him to the PT once a week or so). If the tort is

not corrected, the plagio will not correct, and there could be long

term effects with the tort as well if it's not resolved properly. So

definitely be diligent with that. If you want to post pictures,

please do and we'll let you know what we think. It sounds like it is

mild to moderate, and I would hope that working on the tort and

continued repo should benefit him greatly. Good luck!

Jake-19m (tort resolved/rt plagio/DOCBand 9 weeks)

Jordan-4

>

> Hi everyone,

> My son Kai just turned 4 months, and I have noticed his plagio

since

> he was about 3 months old....I diagnosed him with torticollis, but

he

> was not diagnosed by the Doctor until yesterday! My husband and I

have

> been trying to reposition him for about a month now, and keep him

off

> his back. I am so surprised that this has happened, because Kai is

> rarely on his back, or in a bouncer seat or his car seat....I carry

> him around a lot and he sleeps during the day on his tummy.

>

> My question is, is there anyone else on here that has had success

> without a band/helmet? My Doc didn't even mention the helmet, just

> physical therapy...... His plagio isn't severe, or close to

> moderate...I may have to post some pics so you can see. We are

going

> to Physical therapy today, but I am not sure how much this will

help,

> anyone else in the same boat?

>

> As ridiculous as this sounds, I feel so guilty......how could I

have

> let this happen? Yet I know it is not entirely my fault.

>

> I am glad this board is here!

>

> April

>

[Guest guest]

Hi April,

Welcome to the group. At4 mo you have time to try repo. The PT should

help him be more comfortable in various positions,but it will be a lot

of work for you since you do mosts of the work at home. I would

recommend regular pictures of his head to see if you're making

progress with repo. If not go ahead and band, it is really not that bad.

As for guilt, I think we all have it, but we shouldn't. I know when

I asked my doctor about my child's head at 2 mo she said " don't

worry " , and I took her bad advice. Your baby is still young and you

have the chance to do something about the shape now, even if you

didn't prevent it (if that was even possible).

-christine

sydney 2 yrs starband grad

>

> Hi everyone,

> My son Kai just turned 4 months, and I have noticed his plagio since

> he was about 3 months old....I diagnosed him with torticollis, but he

> was not diagnosed by the Doctor until yesterday! My husband and I have

> been trying to reposition him for about a month now, and keep him off

> his back. I am so surprised that this has happened, because Kai is

> rarely on his back, or in a bouncer seat or his car seat....I carry

> him around a lot and he sleeps during the day on his tummy.

>

> My question is, is there anyone else on here that has had success

> without a band/helmet? My Doc didn't even mention the helmet, just

> physical therapy...... His plagio isn't severe, or close to

> moderate...I may have to post some pics so you can see. We are going

> to Physical therapy today, but I am not sure how much this will help,

> anyone else in the same boat?

>

> As ridiculous as this sounds, I feel so guilty......how could I have

> let this happen? Yet I know it is not entirely my fault.

>

> I am glad this board is here!

>

> April

>

[Guest guest]

I would say the same things...how could i...why didn't i...i should

have. Our ped would always stop me. Now I understand why.

We can't change the past. But we can work from here forward.

Do what you can until it's the way you want.

>

> Hi everyone,

> My son Kai just turned 4 months, and I have noticed his plagio

since

> he was about 3 months old....I diagnosed him with torticollis, but

he

> was not diagnosed by the Doctor until yesterday! My husband and I

have

> been trying to reposition him for about a month now, and keep him

off

> his back. I am so surprised that this has happened, because Kai is

> rarely on his back, or in a bouncer seat or his car seat....I carry

> him around a lot and he sleeps during the day on his tummy.

>

> My question is, is there anyone else on here that has had success

> without a band/helmet? My Doc didn't even mention the helmet, just

> physical therapy...... His plagio isn't severe, or close to

> moderate...I may have to post some pics so you can see. We are

going

> to Physical therapy today, but I am not sure how much this will

help,

> anyone else in the same boat?

>

> As ridiculous as this sounds, I feel so guilty......how could I

have

> let this happen? Yet I know it is not entirely my fault.

>

> I am glad this board is here!

>

> April

>

[Guest guest]

Welcome,

I hope times flies until your appointment. I also had a strange bump

near my wrist my rheumy said it was a cyst caused my wrist being so

swollen. It's nearly gone since I started enbrel.

Good Luck with your appt.

Diane

[Guest guest]

WELCOME kristina, i'm sorry to here about ur dx. i hope this group will b of

some support to u. it has helped me alot.

hang in there the 31 is around the corner and u have been dealing with this for

a couple of months now so just hold on a lil

longer. hope everything goes well at ur appt. keep me posted. god bless,melynda

gamez

[ ] New here....

Hi, just wanted to introduce myself--I just joined after being

'tentatively' diagnosed with RA by my Internist.  I've got an

appointment with a rheumatologist, but not till Oct. 31st.  Basically

I went to my doctor after suffering a couple months of

near-debilitating fatigue, coupled with general achiness and joint

pain that almost felt flu-like.  I was also having minor chest

pains--still not sure what that's about (except maybe stress!).  The

joint stiffness/pain mostly seems to come and go, and it mostly seems

symmetrical (as in, both wrists/hands hurt at the same time) though I

have had one entire arm hurt and not the other.  I also had a weird,

unexplained 'bump' under the skin near my left wrist, but it went away

on its own after a few weeks.  Standing on my feet all days leaves me

in tears by the day's end, my feet/ankles hurt so bad, and the next

day I can barely walk.  I've also had problems all year with really

severe eye inflammation and dryness that my eye doctor couldn't really

explain, but now I wonder if it's related. 

So....she ran a bazillion blood tests, and the Rheumatoid factor

apparently came back normal (it's listed as RA Latex Turbid, if that

means anything to anyone!), as 3.0 IU/mL. 

But my C-Reactive Protein test came back high, 5.2 H mg/L, which I

guess indicates an active systemic inflammation (though I don't think

it's *that* elevated, since apparently the 'normal' range runs up to

4.9).

Lastly, the bloodwork tested positive for CCP IgG Antibodies, at 9 H

U/mL (I'm told greater than 5 is considered 'positive').

So....basically I don't know what to think.  Neg. RA factor, but pos.

CCP IgG.  From what I've researched, the CCP antibodies can 'predict'

RA before it's actually developed, and it does look like I already

have some inflammation going on.  I also read somewhere that the

positive CCP test can indicate what will be a more erosive form of RA,

so they sometimes recommend more vigorous treatment. 

Right now I'm mostly baffled, not sure what my diagnosis will be, and

wishing I didn't have to wait so long to see the Rheumatologist.  In

the meantime, I'm just taking Advil when I need it for the joint

pain/stiffness. 

Oh, and I'm 39 (and already falling apart!).  And to make matters

worse, I'm the mom of two small kids, which keeps me crazy busy, AND

I'm an author (with book deadlines looming!), which means I'm very

worried about losing mobility in my fingers (I need the to write!).

Anyway, enough whining.  I'm glad to have found this group, as I think

it's fairly likely that I've got some sort of RA. 

) a 

------------------------------------

[Guest guest]

Hi a,

Sorry you had to find your way here, but if you did, it's probably

because you should have. A lot of what you shared pretty much

follows the rapid progression I found myself in the last few months

and I was recently diagnosed by a Rheumy with RA.

Even if you are waiting, there are a couple things you can do. If

your PCP hasn't prescribed anything for the inflammation, he can and

probably should. The normal protocol is Prednisone and/or a NSAID

type drug. Before I was able to ge in to see the Rheumy I was put on

the Prednisone and Celebrex. With the Prednisone I found almost

immediate relief. That is in about 24-48 hours I felt so much

better. At least I could function. The Prednisone is not a long

term solution though because of side effects and the effects it can

have on your system. The Rheumy though would be in a better position

to " officially " give you a diagnosis and a longer term solution.

The other thing I would do is call back the Rheumy and ask them to

put you on their list of people " waiting for a opening due to a

cancellation " . Most doctors honor those requests. You might be able

to get in sooner than Oct 31. Depending on where you live, and the

number of Rheumy's in your area, 3 weeks may not be too bad. Still,

you need to be at least taking care of that inflammation and with

that you should find some temporary relief.

Best of luck with your journey as as you find the answers to the

issues causing your pain. I pray your wait is short and painless.

Bob

>

> Hi, just wanted to introduce myself--I just joined after being

> 'tentatively' diagnosed with RA by my Internist. I've got an

> appointment with a rheumatologist, but not till Oct. 31st.

Basically

> I went to my doctor after suffering a couple months of

> near-debilitating fatigue, coupled with general achiness and joint

> pain that almost felt flu-like. I was also having minor chest

> pains--still not sure what that's about (except maybe stress!). The

> joint stiffness/pain mostly seems to come and go, and it mostly

seems

> symmetrical (as in, both wrists/hands hurt at the same time) though

I

> have had one entire arm hurt and not the other. I also had a weird,

> unexplained 'bump' under the skin near my left wrist, but it went

away

> on its own after a few weeks. Standing on my feet all days leaves

me

> in tears by the day's end, my feet/ankles hurt so bad, and the next

> day I can barely walk. I've also had problems all year with really

> severe eye inflammation and dryness that my eye doctor couldn't

really

> explain, but now I wonder if it's related.

>

> So....she ran a bazillion blood tests, and the Rheumatoid factor

> apparently came back normal (it's listed as RA Latex Turbid, if that

> means anything to anyone!), as 3.0 IU/mL.

>

> But my C-Reactive Protein test came back high, 5.2 H mg/L, which I

> guess indicates an active systemic inflammation (though I don't

think

> it's *that* elevated, since apparently the 'normal' range runs up to

> 4.9).

>

> Lastly, the bloodwork tested positive for CCP IgG Antibodies, at 9 H

> U/mL (I'm told greater than 5 is considered 'positive').

>

> So....basically I don't know what to think. Neg. RA factor, but

pos.

> CCP IgG. From what I've researched, the CCP antibodies

can 'predict'

> RA before it's actually developed, and it does look like I already

> have some inflammation going on. I also read somewhere that the

> positive CCP test can indicate what will be a more erosive form of

RA,

> so they sometimes recommend more vigorous treatment.

>

> Right now I'm mostly baffled, not sure what my diagnosis will be,

and

> wishing I didn't have to wait so long to see the Rheumatologist. In

> the meantime, I'm just taking Advil when I need it for the joint

> pain/stiffness.

>

> Oh, and I'm 39 (and already falling apart!). And to make matters

> worse, I'm the mom of two small kids, which keeps me crazy busy, AND

> I'm an author (with book deadlines looming!), which means I'm very

> worried about losing mobility in my fingers (I need the to write!).

>

> Anyway, enough whining. I'm glad to have found this group, as I

think

> it's fairly likely that I've got some sort of RA.

>

> ) a

>

[Guest guest]

a,

I am sorry I did not reply yet. I marked it yesterday and well, I

just forgot. I try not to ever do that.

Bob gave you the advice that I would have. We do care about your

appointment and what the rhuemmy says. If you ever feel alone in

your battle come here. You are never alone with this cyber group of

fellow suffers.

There are times we reach out for guidance and support. There are

also times we vent. Life can be so challanging and frustrating with

RA, Fibro, Lupus and all of the other related diseases. Sometimes it

is the lack of understanding from others that gets to us. What I am

trying to say if you need understanding or to let off steam, Honey,

you got a place to do it.

I hope you have a good experience with your rheummy and that you

will be getting relief very soon.

God Bless,

Shirley

> [ ] New here....

>

> Hi, just wanted to introduce myself--I just joined after being

> 'tentatively' diagnosed with RA by my Internist.  I've got an

> appointment with a rheumatologist, but not till Oct. 31st. 

Basically

> I went to my doctor after suffering a couple months of

> near-debilitating fatigue, coupled with general achiness and joint

> pain that almost felt flu-like.  I was also having minor chest

> pains--still not sure what that's about (except maybe stress!). 

The

> joint stiffness/pain mostly seems to come and go, and it mostly

seems

> symmetrical (as in, both wrists/hands hurt at the same time)

though I

> have had one entire arm hurt and not the other.  I also had a

weird,

> unexplained 'bump' under the skin near my left wrist, but it went

away

> on its own after a few weeks.  Standing on my feet all days leaves

me

> in tears by the day's end, my feet/ankles hurt so bad, and the next

> day I can barely walk.  I've also had problems all year with really

> severe eye inflammation and dryness that my eye doctor couldn't

really

> explain, but now I wonder if it's related. 

>

> So....she ran a bazillion blood tests, and the Rheumatoid factor

> apparently came back normal (it's listed as RA Latex Turbid, if

that

> means anything to anyone!), as 3.0 IU/mL. 

>

> But my C-Reactive Protein test came back high, 5.2 H mg/L, which I

> guess indicates an active systemic inflammation (though I don't

think

> it's *that* elevated, since apparently the 'normal' range runs up

to

> 4.9).

>

> Lastly, the bloodwork tested positive for CCP IgG Antibodies, at 9

H

> U/mL (I'm told greater than 5 is considered 'positive').

>

> So....basically I don't know what to think.  Neg. RA factor, but

pos.

> CCP IgG.  From what I've researched, the CCP antibodies

can 'predict'

> RA before it's actually developed, and it does look like I already

> have some inflammation going on.  I also read somewhere that the

> positive CCP test can indicate what will be a more erosive form of

RA,

> so they sometimes recommend more vigorous treatment. 

>

> Right now I'm mostly baffled, not sure what my diagnosis will be,

and

> wishing I didn't have to wait so long to see the Rheumatologist. 

In

> the meantime, I'm just taking Advil when I need it for the joint

> pain/stiffness. 

>

> Oh, and I'm 39 (and already falling apart!).  And to make matters

> worse, I'm the mom of two small kids, which keeps me crazy busy,

AND

> I'm an author (with book deadlines looming!), which means I'm very

> worried about losing mobility in my fingers (I need the to

write!).

>

> Anyway, enough whining.  I'm glad to have found this group, as I

think

> it's fairly likely that I've got some sort of RA. 

>

> ) a 

>

>

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

>

>

[Guest guest]

Thank you SO much for the warm welcome and much-appreciated advice! I

did call and put myself on the 'in case of cancellation' list, so

we'll see. I live in NYC where you'd *think* there would be plenty of

rheumatologists. Probably are, but I wanted to see the one my

Internist recommended, mainly because they work at the same hospital

and my records/history, etc., are available to be shared between the

practices. Just makes some things easier.

Anyway, thanks again, and I'm SO glad to have found you all--and

wishing everyone a pain-free day.

) a

[Guest guest]

Hi Mandi and welcome, this is a great group.  I'm 38 and have been dx with RA

since 2006, symptomatic since 1998 but misdiagnosed as reactive arthritis.  I

recommend making 2-3 appts with rheumatologists in your area.  You will want to

find someone who is a good fit for you, and who answers your questions.  Don't

settle for one who isn't a good fit - although I realize not everyone is lucky

to have options depending on geography.

There are many things to try, and lots of good medicine.  Water exercise is

great, as is stretching and flexibility like yoga or tai chi.  I take Enbrel

which is an antiTNF.  I work full time and chase 2 small kids.  My rheum

considers me in near medication-induced remission.  RA can be managed, but it

can take patience along with trial and error.

Best,

Kate F

________________________________

From: amanda.dixon73 <amanda.dixon73@...>

Sent: Monday, September 28, 2009 2:10:31 PM

Subject: [ ] New here....

 

Hi everyone. I am 36 yrs old and just recently diagnosed with RA. I asked my mom

if I had ever had any problems back when I was younger and I may have had it

when I was 6 or 7 years old. But back then our doctor never did anything about

anything

So here I am having serious flare ups and in so much pain. Have horrible

migraines, joint swelling, on NSAIDs, using heating pads to help with pain. Just

starting into any type of treatment. I am scared and have no knowledge about any

of this!

I dont know what to expect. I don't know what type of drugs to even talk to my

rheumatologist about or what available treatments are out there.

My husband is, bless his heart, trying to understand everything. He has been

there during my serious migraines, and hates to see me in pain. And now this! He

feels helpless b/c he doesnt know how to help, and I don't know what to do

either!

Can anyone offer me any suggestions? Are there any alternative type therapies

out there to help? I really don't want to take drugs but understand if I have

to, I will.

Thanks,

Mandi

[Guest guest]

unfortunately I am not able to pick and choose my rheumatologist   my husband

is military and I have to go to whoever they send me to! 

it is good to know about the yoga and tai chi!  I love yoga but have gotten out

of it recently.  Are there any tips for someone who is new to this?  such as

heating pads, rice pads, ice packs, meditation?  My regular doctor prescribed me

naprosyn and it is NOT working...and then said to do ice packs or heat...but

seriously, trying to put three of 4 heating pads on all these areas seems

ridiculous! 

Mandi

 

________________________________

From: Fair <kalfoley@...>

Sent: Monday, September 28, 2009 5:56:13 PM

Subject: Re: [ ] New here....

 

Hi Mandi and welcome, this is a great group.  I'm 38 and have been dx with RA

since 2006, symptomatic since 1998 but misdiagnosed as reactive arthritis.  I

recommend making 2-3 appts with rheumatologists in your area.  You will want to

find someone who is a good fit for you, and who answers your questions.  Don't

settle for one who isn't a good fit - although I realize not everyone is lucky

to have options depending on geography.

There are many things to try, and lots of good medicine.  Water exercise is

great, as is stretching and flexibility like yoga or tai chi.  I take Enbrel

which is an antiTNF.  I work full time and chase 2 small kids.  My rheum

considers me in near medication-induced remission.  RA can be managed, but it

can take patience along with trial and error.

Best,

Kate F

Thanks,

Mandi

[Guest guest]

Mandi, where are you?  Sure you can choose your rheumatologist.  You just have

to figure out how to work the system.  Are you in a major MTF catchment area, or

are you out in a remote area?  I was Navy for 6 years and I managed to finagle

infertility care in the private sector.  It just takes the backing of a good PCP

and a lot of patience to work the phones and referrals.

________________________________

From: Dixon <amanda.dixon73@...>

Sent: Tuesday, September 29, 2009 3:06:23 PM

Subject: Re: [ ] New here....

 

unfortunately I am not able to pick and choose my rheumatologist   my husband

is military and I have to go to whoever they send me to! 

it is good to know about the yoga and tai chi!  I love yoga but have gotten out

of it recently.  Are there any tips for someone who is new to this?  such as

heating pads, rice pads, ice packs, meditation?  My regular doctor prescribed me

naprosyn and it is NOT working...and then said to do ice packs or heat...but

seriously, trying to put three of 4 heating pads on all these areas seems

ridiculous! 

Mandi

 

____________ _________ _________ __

From: Fair <kalfoley (DOT) com>

@gro ups.com

Sent: Monday, September 28, 2009 5:56:13 PM

Subject: Re: [ ] New here....

 

Hi Mandi and welcome, this is a great group.  I'm 38 and have been dx with RA

since 2006, symptomatic since 1998 but misdiagnosed as reactive arthritis.  I

recommend making 2-3 appts with rheumatologists in your area.  You will want to

find someone who is a good fit for you, and who answers your questions.  Don't

settle for one who isn't a good fit - although I realize not everyone is lucky

to have options depending on geography.

There are many things to try, and lots of good medicine.  Water exercise is

great, as is stretching and flexibility like yoga or tai chi.  I take Enbrel

which is an antiTNF.  I work full time and chase 2 small kids.  My rheum

considers me in near medication-induced remission.  RA can be managed, but it

can take patience along with trial and error.

Best,

Kate F

Thanks,

Mandi

[Guest guest]

In the Norfolk area.  But I already have an off-base provider, so I am not sure

how to go about having my dr refer me to a " good " rheumy!  I'll try!

thanks,

Mandi

________________________________

From: Fair <kalfoley@...>

Sent: Tuesday, September 29, 2009 4:12:27 PM

Subject: Re: [ ] New here....

 

Mandi, where are you?  Sure you can choose your rheumatologist.  You just have

to figure out how to work the system.  Are you in a major MTF catchment area, or

are you out in a remote area?  I was Navy for 6 years and I managed to finagle

infertility care in the private sector.  It just takes the backing of a good PCP

and a lot of patience to work the phones and referrals.

the writer's permission.

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[Guest guest]

Oh in Norfolk you should have tons of options!  First step you have to get a PCP

to be your main man/gal.  Find one that you really like and get to know them. 

It's important not just for rheum referrals, but so that they can help you when

you're in a jam.  Often a PCP can prescribe NSAIDS, pain pills, or pred while

you're waiting to see your rheum.  A good PCP is key.  My USN PCP missed my RA

which bummed me out down the road, but she had a good heart and was a good

quarterback when I was going thru infertility treatment.  Get that PCP (see

multiples until you find one you like, if you must) and then if Norfolk doesn't

have an internal rheum, as you know, you get a " referral out " .  Well, they can

put in a " by name " referral if you hear of a good rheum that you like.  You're

only in a pinch if the civilian provider refuses to take Tricare.  However with

the war, many providers have felt a tad more patriotic and have expanded to take

Tricare

beneficiaries.  Check out Melton in the American College of Rheumatology

directory.  He moved somewhere down there and he's *amazing*.  I saw him in the

DC area before he semi retired and moved to coastal VA.

Keep me posted Mandi.  I still have plenty of henchmen in Navy medicine and I'm

happy to get on the phones for you.  I'm actually considering a job offer (I do

that all the time, I " m ridiculous with the job hopping) in the Portsmouth Naval

Hospital, so I pride myself on staying in the mix.

Best,

Kate F

________________________________

From: Dixon <amanda.dixon73@...>

Sent: Tuesday, September 29, 2009 3:54:32 PM

Subject: Re: [ ] New here....

 

In the Norfolk area.  But I already have an off-base provider, so I am not sure

how to go about having my dr refer me to a " good " rheumy!  I'll try!

thanks,

Mandi

____________ _________ _________ __

From: Fair <kalfoley (DOT) com>

@gro ups.com

Sent: Tuesday, September 29, 2009 4:12:27 PM

Subject: Re: [ ] New here....

 

Mandi, where are you?  Sure you can choose your rheumatologist.  You just have

to figure out how to work the system.  Are you in a major MTF catchment area, or

are you out in a remote area?  I was Navy for 6 years and I managed to finagle

infertility care in the private sector.  It just takes the backing of a good PCP

and a lot of patience to work the phones and referrals.

the writer's permission.

of Use | Unsubscribe

Recent Activity

*  11

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*  1

New FilesVisit Your Group

New web site?

Drive traffic now.

Get your business

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on

Join a Group

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[Guest guest]

I dont even see a PCP on base.  They were all full up when we moved here.  So I

have a PCM off base (civilian doctor) that is why they found out about the

RA...I never got an answer with a military doctor...just prescribed Motrin and

the whole " it is probably the weather " deal. with the off-base doctor I pushed

them to find out what was wrong

I really want to see if there is anything else that can be done.  Right now it

is just about getting as much information as I can

Mandi

________________________________

From: Fair <kalfoley@...>

Sent: Tuesday, September 29, 2009 5:48:53 PM

Subject: Re: [ ] New here....

 

Oh in Norfolk you should have tons of options!  First step you have to get a PCP

to be your main man/gal.  Find one that you really like and get to know them. 

It's important not just for rheum referrals, but so that they can help you when

you're in a jam.  Often a PCP can prescribe NSAIDS, pain pills, or pred while

you're waiting to see your rheum.  A good PCP is key.  My USN PCP missed my RA

which bummed me out down the road, but she had a good heart and was a good

quarterback when I was going thru infertility treatment.  Get that PCP (see

multiples until you find one you like, if you must) and then if Norfolk doesn't

have an internal rheum, as you know, you get a " referral out " .  Well, they can

put in a " by name " referral if you hear of a good rheum that you like.  You're

only in a pinch if the civilian provider refuses to take Tricare.  However with

the war, many providers have felt a tad more patriotic and have expanded to take

Tricare

beneficiaries.  Check out Melton in the American College of Rheumatology

directory.  He moved somewhere down there and he's *amazing*.  I saw him in the

DC area before he semi retired and moved to coastal VA.

Keep me posted Mandi.  I still have plenty of henchmen in Navy medicine and I'm

happy to get on the phones for you.  I'm actually considering a job offer (I do

that all the time, I " m ridiculous with the job hopping) in the Portsmouth Naval

Hospital, so I pride myself on staying in the mix.

Best,

Kate

[Guest guest]

i have one and its the best thing i ever did was buy it

Jolene

In a message dated 9/30/2009 1:02:10 P.M. Eastern Daylight Time,

rupertsmum@... writes:

Hi Mandi

I read a good tip on an RA website which was to use an electric blanket,

its basically a giant heat pad! On a really bad day it does help if you can

lie down for an hour or two on a nice warm bed

Sharon xx

________________________________

From: Dixon <_amanda.dixon73@..._

(mailto:amanda.dixon73@...) >

_ @groRA-SUPP_ (mailto: )

Sent: Tuesday, 29 September, 2009 21:06:23

Subject: Re: [ ] New here....

unfortunately I am not able to pick and choose my rheumatologist my

husband is military and I have to go to whoever they send me to!

it is good to know about the yoga and tai chi! I love yoga but have gotten

out of it recently. Are there any tips for someone who is new to this?

such as heating pads, rice pads, ice packs, meditation? My regular doctor

prescribed me naprosyn and it is NOT working...and then said to do ice packs or

heat...but seriously, trying to put three of 4 heating pads on all these

areas seems ridiculous!

Mandi

____________ _________ _________ __

From: Fair <kalfoley (DOT) com>

@gro ups.com

Sent: Monday, September 28, 2009 5:56:13 PM

Subject: Re: [ ] New here....

Hi Mandi and welcome, this is a great group. I'm 38 and have been dx with

RA since 2006, symptomatic since 1998 but misdiagnosed as reactive

arthritis. I recommend making 2-3 appts with rheumatologists in your area. You

will

want to find someone who is a good fit for you, and who answers your

questions. Don't settle for one who isn't a good fit - although I realize not

everyone is lucky to have options depending on geography.

There are many things to try, and lots of good medicine. Water exercise is

great, as is stretching and flexibility like yoga or tai chi. I take

Enbrel which is an antiTNF. I work full time and chase 2 small kids. My rheum

considers me in near medication-induced remission. RA can be managed, but it

can take patience along with trial and error.

Best,

Kate F

Thanks,

Mandi

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

Hi Mandy:

 

I hope you find a good dr. in your area.  You need to treat your RA very

aggressively.  It is hard to find a great dr. but they are out there.

 

Wishing you better days ahead.

 

Hugs,

 

Barbara

From: Dixon <amanda.dixon73@...>

Subject: Re: [ ] New here....

Date: Tuesday, September 29, 2009, 6:56 PM

 

I dont even see a PCP on base.  They were all full up when we moved here.  So I

have a PCM off base (civilian doctor) that is why they found out about the

RA...I never got an answer with a military doctor...just prescribed Motrin and

the whole " it is probably the weather " deal. with the off-base doctor I pushed

them to find out what was wrong

I really want to see if there is anything else that can be done.  Right now it

is just about getting as much information as I can

Mandi

____________ _________ _________ __

From: Fair <kalfoley (DOT) com>

@gro ups.com

Sent: Tuesday, September 29, 2009 5:48:53 PM

Subject: Re: [ ] New here....

 

Oh in Norfolk you should have tons of options!  First step you have to get a PCP

to be your main man/gal.  Find one that you really like and get to know them. 

It's important not just for rheum referrals, but so that they can help you when

you're in a jam.  Often a PCP can prescribe NSAIDS, pain pills, or pred while

you're waiting to see your rheum.  A good PCP is key.  My USN PCP missed my RA

which bummed me out down the road, but she had a good heart and was a good

quarterback when I was going thru infertility treatment.  Get that PCP (see

multiples until you find one you like, if you must) and then if Norfolk doesn't

have an internal rheum, as you know, you get a " referral out " .  Well, they can

put in a " by name " referral if you hear of a good rheum that you like.  You're

only in a pinch if the civilian provider refuses to take Tricare.  However with

the war, many providers have felt a tad more patriotic and have expanded to take

Tricare

beneficiaries.  Check out Melton in the American College of Rheumatology

directory.  He moved somewhere down there and he's *amazing*.  I saw him in the

DC area before he semi retired and moved to coastal VA.

Keep me posted Mandi.  I still have plenty of henchmen in Navy medicine and I'm

happy to get on the phones for you.  I'm actually considering a job offer (I do

that all the time, I " m ridiculous with the job hopping) in the Portsmouth Naval

Hospital, so I pride myself on staying in the mix.

Best,

Kate

[Guest guest]

Hi Mandi

I read a good tip on an RA website which was to use an electric blanket, its

basically a giant heat pad! On a really bad day it does help if you can lie

down for an hour or two on a nice warm bed

Sharon xx

________________________________

From: Dixon <amanda.dixon73@...>

Sent: Tuesday, 29 September, 2009 21:06:23

Subject: Re: [ ] New here....

unfortunately I am not able to pick and choose my rheumatologist my husband

is military and I have to go to whoever they send me to!

it is good to know about the yoga and tai chi! I love yoga but have gotten out

of it recently. Are there any tips for someone who is new to this? such as

heating pads, rice pads, ice packs, meditation? My regular doctor prescribed me

naprosyn and it is NOT working...and then said to do ice packs or heat...but

seriously, trying to put three of 4 heating pads on all these areas seems

ridiculous!

Mandi

____________ _________ _________ __

From: Fair <kalfoley (DOT) com>

@gro ups.com

Sent: Monday, September 28, 2009 5:56:13 PM

Subject: Re: [ ] New here....

Hi Mandi and welcome, this is a great group. I'm 38 and have been dx with RA

since 2006, symptomatic since 1998 but misdiagnosed as reactive arthritis. I

recommend making 2-3 appts with rheumatologists in your area. You will want to

find someone who is a good fit for you, and who answers your questions. Don't

settle for one who isn't a good fit - although I realize not everyone is lucky

to have options depending on geography.

There are many things to try, and lots of good medicine. Water exercise is

great, as is stretching and flexibility like yoga or tai chi. I take Enbrel

which is an antiTNF. I work full time and chase 2 small kids. My rheum

considers me in near medication-induced remission. RA can be managed, but it

can take patience along with trial and error.

Best,

Kate F

Thanks,

Mandi

[Guest guest]

They also make an electric lap blanket that is wonderful. (Sam's had them last

year around Chirstmas time.) It is small enough that it is easy to take with you

when traveling.  I also have one that plugs into the lighter in the car.  My

husband is very hot natured and it was getting to the point we could not go

anywhere together.  I even use it in the summer when he cranks the air

conditioning down.  Wonderful.  Between that and heated seats I'm good to go.

 Dreading winter coming but loving the beautiful day we are having.  Low 70's

and low humidity-very rare combination in Tennessee.  Hope everyone is having a

good day.  linda

From: Jolenefive@... <Jolenefive@...>

Subject: Re: [ ] New here....

Date: Wednesday, September 30, 2009, 12:45 PM

 

i have one and its the best thing i ever did was buy it

Jolene

In a message dated 9/30/2009 1:02:10 P.M. Eastern Daylight Time,

rupertsmum (DOT) co.uk writes:

Hi Mandi

I read a good tip on an RA website which was to use an electric blanket,

its basically a giant heat pad! On a really bad day it does help if you can

lie down for an hour or two on a nice warm bed

Sharon xx

____________ _________ _________ __

From: Dixon <_amanda.dixon73@ amanda.di_

(mailto:amanda.dixon73) >

_ @ groRA- SUPP_ (mailto: @gro ups.com)

Sent: Tuesday, 29 September, 2009 21:06:23

Subject: Re: [ ] New here....

unfortunately I am not able to pick and choose my rheumatologist my

husband is military and I have to go to whoever they send me to!

it is good to know about the yoga and tai chi! I love yoga but have gotten

out of it recently. Are there any tips for someone who is new to this?

such as heating pads, rice pads, ice packs, meditation? My regular doctor

prescribed me naprosyn and it is NOT working...and then said to do ice packs or

heat...but seriously, trying to put three of 4 heating pads on all these

areas seems ridiculous!

Mandi

____________ _________ _________ __

From: Fair <kalfoley (DOT) com>

@gro ups.com

Sent: Monday, September 28, 2009 5:56:13 PM

Subject: Re: [ ] New here....

Hi Mandi and welcome, this is a great group. I'm 38 and have been dx with

RA since 2006, symptomatic since 1998 but misdiagnosed as reactive

arthritis. I recommend making 2-3 appts with rheumatologists in your area. You

will

want to find someone who is a good fit for you, and who answers your

questions. Don't settle for one who isn't a good fit - although I realize not

everyone is lucky to have options depending on geography.

There are many things to try, and lots of good medicine. Water exercise is

great, as is stretching and flexibility like yoga or tai chi. I take

Enbrel which is an antiTNF. I work full time and chase 2 small kids. My rheum

considers me in near medication-induced remission. RA can be managed, but it

can take patience along with trial and error.

Best,

Kate F

Thanks,

Mandi

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

JC Penny's had been carrying those lap blankets

Last winter......I bought 2! They were $24.99

Each....

Sent from my iPhone

On Sep 30, 2009, at 2:53 PM, Boyd <lindagb52@...> wrote:

They also make an electric lap blanket that is wonderful. (Sam's had them last

year around Chirstmas time.) It is small enough that it is easy to take with you

when traveling. I also have one that plugs into the lighter in the car. My

husband is very hot natured and it was getting to the point we could not go

anywhere together. I even use it in the summer when he cranks the air

conditioning down. Wonderful. Between that and heated seats I'm good to go.

Dreading winter coming but loving the beautiful day we are having. Low 70's and

low humidity-very rare combination in Tennessee. Hope everyone is having a good

day. linda

From: Jolenefive@... <Jolenefive@...>

Subject: Re: [ ] New here....

Date: Wednesday, September 30, 2009, 12:45 PM

i have one and its the best thing i ever did was buy it

Jolene

In a message dated 9/30/2009 1:02:10 P.M. Eastern Daylight Time,

rupertsmum (DOT) co.uk writes:

Hi Mandi

I read a good tip on an RA website which was to use an electric blanket,

its basically a giant heat pad! On a really bad day it does help if you can

lie down for an hour or two on a nice warm bed

Sharon xx

____________ _________ _________ __

From: Dixon <_amanda.dixon73@ amanda.di_

(mailto:amanda.dixon73) >

_ @ groRA- SUPP_ (mailto: @gro ups.com)

Sent: Tuesday, 29 September, 2009 21:06:23

Subject: Re: [ ] New here....

unfortunately I am not able to pick and choose my rheumatologist my

husband is military and I have to go to whoever they send me to!

it is good to know about the yoga and tai chi! I love yoga but have gotten

out of it recently. Are there any tips for someone who is new to this?

such as heating pads, rice pads, ice packs, meditation? My regular doctor

prescribed me naprosyn and it is NOT working...and then said to do ice packs or

heat...but seriously, trying to put three of 4 heating pads on all these

areas seems ridiculous!

Mandi

____________ _________ _________ __

From: Fair <kalfoley (DOT) com>

@gro ups.com

Sent: Monday, September 28, 2009 5:56:13 PM

Subject: Re: [ ] New here....

Hi Mandi and welcome, this is a great group. I'm 38 and have been dx with

RA since 2006, symptomatic since 1998 but misdiagnosed as reactive

arthritis. I recommend making 2-3 appts with rheumatologists in your area. You

will

want to find someone who is a good fit for you, and who answers your

questions. Don't settle for one who isn't a good fit - although I realize not

everyone is lucky to have options depending on geography.

There are many things to try, and lots of good medicine. Water exercise is

great, as is stretching and flexibility like yoga or tai chi. I take

Enbrel which is an antiTNF. I work full time and chase 2 small kids. My rheum

considers me in near medication-induced remission. RA can be managed, but it

can take patience along with trial and error.

Best,

Kate F

Thanks,

Mandi

[Guest guest]

Welcome to the group! I was diagnosed with Seronegative RA two years ago at

46. Fortunately, I was able to find an excellent rheumatologist from the

start and feel very blessed. I am on methotrexate and folic acid. My RA

is under control and most people would not even imagine that I have it. I

go to the gym three days a week and work on the elyptical machines and do

weight training. I tell you these things because you can have a " normal "

life with RA. Before I was diagnosed, the breeze from the ceiling fan was

excrutiating to my swollen joints. I had to drag myself to the bathroom

sometimes. I have only had two flares in the last year....one brought on

when I tried to taper off the medication (with my Dr's permission). To me,

the scariest part of RA was reading the pamphlets about the medications.

The drugs can have serious side effects, but I believe that you have to

weigh the side effects with your quality of life. Methotrexate gave me my

life back and that it worth so much! Good luck to you in finding a

treatment that works for you. As for the heat issue....my rheumatologist

says ice only. At first, it doesn't seem as if ice is going to give any

relief, but it does eventually because it reduces the inflammation. Heat

only increases inflammation...BUT, I have used it occasionally just to get

temporary relief from the pain. I know that sometimes, you just have to do

what you have to do to get you through it. Anyway, the gel packs that are

kept in the freezer and stay flexible are terrific! You can sometimes buy

larger ones from physical therapists or chiropracters.

-Jackie

On Mon, Sep 28, 2009 at 2:10 PM, amanda.dixon73 <amanda.dixon73@...>wrote:

>

>

> Hi everyone. I am 36 yrs old and just recently diagnosed with RA. I asked

> my mom if I had ever had any problems back when I was younger and I may have

> had it when I was 6 or 7 years old. But back then our doctor never did

> anything about anything

> So here I am having serious flare ups and in so much pain. Have horrible

> migraines, joint swelling, on NSAIDs, using heating pads to help with pain.

> Just starting into any type of treatment. I am scared and have no knowledge

> about any of this!

> I dont know what to expect. I don't know what type of drugs to even talk to

> my rheumatologist about or what available treatments are out there.

> My husband is, bless his heart, trying to understand everything. He has

> been there during my serious migraines, and hates to see me in pain. And now

> this! He feels helpless b/c he doesnt know how to help, and I don't know

> what to do either!

> Can anyone offer me any suggestions? Are there any alternative type

> therapies out there to help? I really don't want to take drugs but

> understand if I have to, I will.

> Thanks,

> Mandi

>

>

>

[Guest guest]

Hi Mystic and Welcome,

I don't know of any sides from androgel other then if the dose is not enough the

man can end up feeling worse. Here is what I tell men on Androgel and all

Testostreone men take is Bioidentical made from yams.

==================================

Yes this happens a lot you start on a low starting dose 5 grams when your brain

sees the testosterone in your blood even just a little it slows down even stops

sending the LH and FSH message to your testis to make the Testosterone you were

making. So lets say your labs for Total T were 350 you add this dose of gel

your brain sees this and you lose the base level you had before the gel.

Now lets say you need more then 5 grams most do so now all your left with is

what the gel is doing so lets say it's doing 200 so you lost 150.

The reason you feel good is your levels go up that 200 the gel is doing in the

first 2 weeks so your levels go up to 550 in theory. The brain sees this and

you fall back.

Why can this happen it might be how your putting on the gel with Androgel you

need to spread it over your upper arms and shoulders and down your back as far

as you can reach this is half of your dose then do the other side. Just spread

it over the area but don't rub it in.

The other thing is it's not getting through your skin good so you need more. If

you have a thyroid problem your skin will become thicker and gels and creams

don't get through the skin and you need to switch to shots.

I tell men when they go on Gels to retest in 2 weeks because you can end up

feeling worse. Most me just need more gel. Dr.'s that tell men to go on 5

grams of gel and come back in 8 to 12 weeks for labs don't know much about the

use of gels. Dr.'s that treat a lot of men for low T on gels see this happen

and test them again in 2 weeks.

Call your Dr. and tell him this and that your not feeling good you were but fell

back.

Co-Moderator

Phil

> From: mysticgrl77 <mystic_pizza7@...>

> Subject: new here....

>

> Date: Wednesday, February 3, 2010, 8:51 AM

> My husband was just diagnosed with

> low testosterone. The Dr. said it was from years of having

> sleep apnea which he is now being treated for with a Cpap.

> She gave him androgel. My husband is nervous about using it

> because of the side effects but according to the dr. she

> says that doing nothing for this is worse.

> I saw on tv that there are bioidentical hormones for

> women.Do they make them for men-(Testosterone)? and if they

> do are they safer than the androgel? I would appreciate any

> input you could give.

> Thanks,

> Mystic

>

>

>

>

>

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

>

>

[Guest guest]

how low is his testosterone?

and how old is he?

>

> My husband was just diagnosed with low testosterone. The Dr. said it was from

years of having sleep apnea which he is now being treated for with a Cpap. She

gave him androgel. My husband is nervous about using it because of the side

effects but according to the dr. she says that doing nothing for this is worse.

> I saw on tv that there are bioidentical hormones for women.Do they make them

for men-(Testosterone)? and if they do are they safer than the androgel? I would

appreciate any input you could give.

> Thanks,

> Mystic

>

[Guest guest]

I'm in the same boat as your husband. Almost exactly.

Years of undiagnosed sleep apnea left my T levels very low.

Androgel is testosterone in a gel form. I use a competing product called

Testim. Almost the same thing.

It will bring his testosterone up to normal levels or close.

The only down side is that he'll likely have to be on it for life since it will

shut down his normal testosterone production.

He also might have some symptoms that come along with rising testosterone like

acne and sore nipples. Very similar to puberty for a male.

Has the CPAP helped? It barely does anything for me. I think in my case, years

of suffering has left my neurochemicals somewhat screwed up. Not fun, but I'm

working on that too.

Hope that helps.

> >

> > My husband was just diagnosed with low testosterone. The Dr. said it was

from years of having sleep apnea which he is now being treated for with a Cpap.

She gave him androgel. My husband is nervous about using it because of the side

effects but according to the dr. she says that doing nothing for this is worse.

> > I saw on tv that there are bioidentical hormones for women.Do they make

them for men-(Testosterone)? and if they do are they safer than the androgel? I

would appreciate any input you could give.

> > Thanks,

> > Mystic

> >

>

[Guest guest]

welcome and ask away

-Jen

>

> Hi, just wanted to stop by and say Hello. I have 3 kids, 1 who was just

diagnosed Autistic. He is 3 y/o. I am new to all of this and might bombard

everyone with questions now and then and I want to apologize in advance.

>