New here

[Guest guest]

WELCOME SHELLLEY, THIS GROUP IS AN AWESOME GROUP & GINA IS AWESOME HERSELF

FINDING INFO.WE MAY NOT KNOW.

GOD BLESS,MELYNDAGAMEZ 9/1/08 10:25P.M.CENTRAL

[ ] Re: New here

Welcome !  Sorry about your diagnose, but glad your here. 

This is a great place to be.  Lots of info, and wonderful people. 

Tawny

>

> Hello Everyone.  I am new here.  I was diagnosed about a year ago. 

I

> was organizing a golf tournament in my father's memory and I think

it

> brought on a lot of stress left over from taking care of him before

> his death.  We were close and it was difficult, but very

meaningful,

> you know?  But anyway, I started with painful swelling in both of

my

> hands and feet.  I went to my doctor who did some blood work which

> came back positive for rheumatoid factor and for c reactive protein

> so she sent me to a rheumatologist.  Also had very dry eyes so sent

> me to my eye doctor.  Before I went to the rheumatologist I read up

> on healing with whole foods and went on a diet of no meat, no eggs,

> no dairy, no sugar, no wheat, no peanuts, no oranges, no chocolate,

> no coffee, no soy and no nightshade vegetables.  The inflammation

and

> pain was gone in a week.  I saw the rheumatologist who put me on

> Plaquenil.  Said I'm in the early stages and gave no credibility to

> the dietary stuff.  I saw a naturopath who agreed with the diet but

> told me to eat soy and fish.  Also gave me a rice protein liquid

> supplement and did some other blood tests that show I'm growing

> thyroid antibodies though my TSH is okay.  So she gave me a thyroid

> activating supplement.  I about went broke doing this and found it

> very difficult to stick to.  I went to a different rheumatologist

who

> has written a book called Living with Rheumatoid Arthritis and I

> really liked her.  She said the diet would probably make anyone

feel

> better but is very difficult to maintain.  She suggested just

giving

> up wheat if I wanted to and kept me on Plaquentil which is what I

am

> taking today.  I no longer have the swelling in hands very often,

> just once in awhile.  I do have pain in hips, knees and feet,

> sometimes hands, but it's not debillitating or anythings, just

> aches.  I just had xrays and my hands and feet have not changed

since

> last year so I am very lucky. 

>

> Sorry I've gone on so long.  Just wanted to introduce my story. 

> Thanks! 

>

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

[Guest guest]

Welcome Margaret,

Glad to see you here, but sorry about your RA. I have been on RA

meds for almost 5 years. I have tried most of the meds, but not all,

yet! I am currently on Humira for the second time, with mtx. My RA

is very active, and my joints are seeing damage. There are a lot of

meds out there, and MOST have side effects. With mtx, you have side

effects that can be stressful. With the biologic meds, there are

side effects, but most of those sneak up on a person. They can be

very dangerous, so one needs to be extra cautious. I have a friend

that almost died on Humira, and have heard several other's with the

same problem. So, you just have to be alert of all the meds out

there. Just because one don't get nausea or fatigue with the

biologic, other serious problems can occur. I am on the biologic

med, it's scary. Right now, I have no other choice, with my joint

damage, I'm not going to get any better. I was on Plaquenil for

awhile, didn't really work for me. It caused eye problems though, so

be careful. I use Prednisone when I'm in a flare, or can't take my

RA meds, and it helps quite a bit. I've chosen not to take them full

time, from all the problems they can cause. Just talk with your

rheumy, and see what your next step might be. I'm glad he is a good

one, and can get you feeling better, Tawny

>

> Hi,

> I realized I'd been replying to emails w/o actually saying 'hi' and

> letting folks know I was new. Hi I'm new. I'm Margaret. I'm 36 and

> have had RA since I was 19. Been through alot with docs because my

RA

> started early and my RA-factor has always been borderline with no

> joint damage.. so despite having the symptoms (swelling, pain, fever

> etc.) it has been a struggle to be taken seriously.. I finally

found a

> great Rheumatolgist that believes me and is helping me ;o)

> But unfortuanetly the last 6 months or so my RA has taken a negative

> spin and now it is affecting my ankles, wrists and elbows (along

with

> my hands where it all started...) ;( and is much worse than before..

> we did find that steriods help and I'm now on

> plaquenil and will go from there....

>

> -Margaret

>

[Guest guest]

Margaret,

Welcome to the group. So nice that you jumped right in and started

participating. Shared knowledge and guidence is such as asset to us.

Thanks, for sharing.

Shirley

>

> Hi,

> I realized I'd been replying to emails w/o actually saying 'hi' and

> letting folks know I was new. Hi I'm new. I'm Margaret. I'm 36 and

> have had RA since I was 19. Been through alot with docs because my

RA

> started early and my RA-factor has always been borderline with no

> joint damage.. so despite having the symptoms (swelling, pain,

fever

> etc.) it has been a struggle to be taken seriously.. I finally

found a

> great Rheumatolgist that believes me and is helping me ;o)

> But unfortuanetly the last 6 months or so my RA has taken a

negative

> spin and now it is affecting my ankles, wrists and elbows (along

with

> my hands where it all started...) ;( and is much worse than

before..

> we did find that steriods help and I'm now on

> plaquenil and will go from there....

>

> -Margaret

>

[Guest guest]

Hi Margret

Welcome to the group. I hope the Dr finds something to give you that will

help.

Heidi M

On Wed, Sep 10, 2008 at 12:41 PM, Margaret <margaret.kamphorst@...>wrote:

> Hi,

> I realized I'd been replying to emails w/o actually saying 'hi' and

> letting folks know I was new. Hi I'm new. I'm Margaret. I'm 36 and

> have had RA since I was 19. Been through alot with docs because my RA

> started early and my RA-factor has always been borderline with no

> joint damage.. so despite having the symptoms (swelling, pain, fever

> etc.) it has been a struggle to be taken seriously.. I finally found a

> great Rheumatolgist that believes me and is helping me ;o)

> But unfortuanetly the last 6 months or so my RA has taken a negative

> spin and now it is affecting my ankles, wrists and elbows (along with

> my hands where it all started...) ;( and is much worse than before..

> we did find that steriods help and I'm now on

> plaquenil and will go from there....

>

> -Margaret

>

>

>

[Guest guest]

WELCOME MARGARET, i think u will enjoy this ra support group. i've been on it i

believe almost close to a year now & LOVE IT!!!!!!!!! the support system is

awesome & the people soo kind & caring. gina our moderator is soo HELPFUL if we

ask a question & don't know the answer or would like to know the answer to..

gina always tries to find it.. hope u feel  BETTER SOON ! god bless,melyndagamez

9/11/08 10:55a.m.central

[ ] New here

Hi,

I realized I'd been replying to emails w/o actually saying 'hi' and

letting folks know I was new.  Hi I'm new. I'm Margaret. I'm 36 and

have had RA since I was 19. Been through alot with docs because my RA

started early and my RA-factor has always been borderline with no

joint damage.. so despite having the symptoms (swelling, pain, fever

etc.) it has been a struggle to be taken seriously.. I finally found a

great Rheumatolgist that believes me and is helping me ;o)

But unfortuanetly the last 6 months or so my RA has taken a negative

spin and now it is affecting my ankles, wrists and elbows (along with

my hands where it all started...) ;( and is much worse than before..

we did find that steriods help and I'm now on

plaquenil and will go from there....

-Margaret

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

[Guest guest]

Welcome to the group, Deb. I'm sorry you are having such problems.

I hope you get in touch with your rheumatologist soon. Maybe you could

email him or her.

Not an MD

On Mon, May 4, 2009 at 5:53 PM, ladydebhood <ladydebhood@...> wrote:

>

>

>

> hello all,

>

> I have had RA and Fibro for at least 10 years, I have had great results

> with low dose pred, methotrexate, and enbrel, also take celexa for

> depression, But I have been having what I think is a flare, but is

> unlike any I have ever had before, so I was wondering if anyone else has

> had a flare like this.

>

> My husband and I went on a short vacation to Virginia Beach the week

> after Easter, we walked our feet off and of course I over did, that was

> my fault. But my question. On Sun night, after we got home on Fri night,

> I woke up with the worst night sweats that I have ever had, when I went

> to bed I had even asked Larry if I felt like I had a fever, he said I

> was a bit warm. this was March 18. Since then I have been having this

> low grade fever off and on, completely exhausted, headache, extreme

> dizziness, sometimes where I feel I might pass out, or vomit. Has anyone

> had a flare like this one, it doesn't feel like the flu. Of course I

> tried to call my Rheumy, but since it is Mon, the phone was busy every

> time I called today.

>

> Thanks for any help. Deb

[Guest guest]

Hi Deb

My DH is geting over a nasty stomach/resp virus. It mimics the flu but

does not have the pain ( of course how would we know if we had joint pain

since it lives with us everyday ) Anyway he was put on Biaxin, increased

pred to 20mg a day for 1 week and just to be sure gave him the tamiflu.

Probably need to try to get ahold of your Doctor again.Let us know

Heidibug

On Mon, May 4, 2009 at 6:53 PM, ladydebhood <ladydebhood@...> wrote:

>

>

>

> hello all,

>

> I have had RA and Fibro for at least 10 years, I have had great results

> with low dose pred, methotrexate, and enbrel, also take celexa for

> depression, But I have been having what I think is a flare, but is

> unlike any I have ever had before, so I was wondering if anyone else has

> had a flare like this.

>

> My husband and I went on a short vacation to Virginia Beach the week

> after Easter, we walked our feet off and of course I over did, that was

> my fault. But my question. On Sun night, after we got home on Fri night,

> I woke up with the worst night sweats that I have ever had, when I went

> to bed I had even asked Larry if I felt like I had a fever, he said I

> was a bit warm. this was March 18. Since then I have been having this

> low grade fever off and on, completely exhausted, headache, extreme

> dizziness, sometimes where I feel I might pass out, or vomit. Has anyone

> had a flare like this one, it doesn't feel like the flu. Of course I

> tried to call my Rheumy, but since it is Mon, the phone was busy every

> time I called today.

>

> Thanks for any help. Deb

>

>

[Guest guest]

Welcome Deb,

Sorry for being so late posting. I hope by now, your able to get some

answers from your rheumy office. I do have those symptoms most of the

time, and not sure why.

The best advice I could give, is to get into the doctor,(ASAP), if this

is all new to you, I would say it's something else.

Keep us posted, and hope you feel better soon,

Tawny

--- In , " ladydebhood " <ladydebhood@...>

wrote:

>

>

> hello all,

>

> I have had RA and Fibro for at least 10 years, I have had great

results

> with low dose pred, methotrexate, and enbrel, also take celexa for

> depression, But I have been having what I think is a flare, but is

> unlike any I have ever had before, so I was wondering if anyone else

has

> had a flare like this.

>

> My husband and I went on a short vacation to Virginia Beach the week

> after Easter, we walked our feet off and of course I over did, that

was

> my fault. But my question. On Sun night, after we got home on Fri

night,

> I woke up with the worst night sweats that I have ever had, when I

went

> to bed I had even asked Larry if I felt like I had a fever, he said I

> was a bit warm. this was March 18. Since then I have been having this

> low grade fever off and on, completely exhausted, headache, extreme

> dizziness, sometimes where I feel I might pass out, or vomit. Has

anyone

> had a flare like this one, it doesn't feel like the flu. Of course I

> tried to call my Rheumy, but since it is Mon, the phone was busy every

> time I called today.

>

> Thanks for any help. Deb

>

>

>

>

[Guest guest]

Hi Bonnie!  I just read your reply and certainly appreciate your understanding

and your kindness.  This seems to be a nice group of persons and I really

appreciate everyone's Understanding and kindness!   I sure hope you get to

feeling better.  I've had no bad pain in several years now and as I might have

said earlier (I never know when or if - my luck could change AGAIN!   i'M

BIPOLAR (for 20 yrs) plus have this R.A. and it feels like I can barely go on

with my life, but I do the best that I can.  Altho I've not had bad Pain during

the past several  years Now (probably Thanks to the Good Lord) --I have  Lots

and Lots of 'fatigue'

& anxiety and some depression, too.  But as long as I'm not too manic and don't

have severe  depression --I just take 2.5 mg. of Zyprexa --for the bi-polar.  I

have recently joinned bipolar group, also Plus a sweepstakes group.

Have not felt like (or had the time) to do much on the sweepstakes STUFF yet but

I did enter a few sweepstakes ---one -hoping to win a hybrid car!  perhaps i'll

win; l o l !

          I might not have mentioned that I've had  R.A. trouble in my left

foot, also!  My toes spread apart - between the 2nd and 3rd toe, seemingly

causing my foot to be wider; I cann't wear many shoes!  It previously hurt lots

in that left foot and I'd have to HOP  AROUND - but no bad pain in my feet in

several years, fortunately. 

         In ref. to Stress;  lately I can't help but to worry and be concerned

about that swine flu; my daughter works in a Restaurant close to the Interstate

and i worry that persons traveling -could be carrying the swine flu.  I have

lung troubles too, so I worry that I might not Live thru it - if I get that

flu!  I know I should not worry so much about things that I have no control

over!   /          Thanks again for your kindness and I wish you the best in

Health, etc. !   Please feel free to email me anytime and complain ANYTIME - as

I will surely Understand.  Several yrs. ago - my right arm - up to close to my

shoulder - gave me lots of Pain; it hurt for 3 or 6 ? months straight, but i've

been lucky as it's not been bad in several years.  But like i've probably

already stated in my Post - my right hands/ fingers are pretty swollen lately,

and i can't make a fist.  Don't know if i can peel potatoes right now?  I could

not

previously with this R.A. trouble in my right fingers/ hand.

          Bye for now!   May God Bless You and THANKS again for welcoming and

replying to my Post and for your Understanding and friendship!         Judy B./

GA. ( usa).

From: Bonnie <tiredtaz@...>

Subject: [ ] Re: New here

Date: Thursday, May 7, 2009, 8:28 PM

Judy,

I'm sorry to hear your not doing well, but I'm glad you found this list... I

tend to be very wishy washy with the list --- I'm active at times and then I

drop off until I remember just how much I need everyone and then once again

become active...

No one here is judgmental and many have sound advice.. others are just really

good listeners and just state that they understand and care... Anyway you look

at it, its comforting when your feeling lower then dirt and in so much pain you

only want to hide from those that can't possibly understand.

I also have most of my problems with my hands and wrists. The

swelling/inflammati on is the biggest problem. However, recently all the

other joints are feeling jealous and trying to jump in on the action... Ugh! I

have yet to have any blood work positively point to any one real problem, so for

now I'm diagnosed as having undifferentiated connective tissue disease... What

a mouthful.

My experience is that most of these auto-immune diseases play a big part with

our stress levels and nerves... The best idea (easier said then done) is to

control our emotions the best we can so that we don't pay the price later...

Hope you find it comfortable and warm here... Feel free to complain as we all

understand the need to vent once in awhile...

Take care

Bonnie

[Guest guest]

Hi Judy,

You have certainly got a lot on your plate. It must be really difficult dealing

with it all and the bi polar on top!!

 

But you just keep on going, because when ever you post to the group, you will

feel better for getting it off your chest. Don't forget, we all have our parts

to play, some days you will hope someone says something to lift you up, the next

it will be you lifting someone else up.

 

You are a special person, as you have a lot to put up with, but you still keep

trying. It's bad enough having RA. I am so glad you haven't had severe pain for

a long time, and I hope it stays that way.

 

When you said " I can barely go on with my life " but that you do the best you

can. That's all any of us can do, but it is difficult sometimes. The fatigue you

talk about is a real bummer isn't it?  Your feet are like mine, toes going off

in different directions, it's hard to tell if you're coming or going. lol

 

I hope your meds help to stabilize your bi polar and you don't get too much

variation in your moods.

 

I don't know how you cope with it all, but I hope you get your hybrid car, then

you won't need to worry about your spreading toes!!!

 

Try not to worry too much about the swine flu, no point in worrying over

something that may never happen. Just concentrate on keeping well and posting to

the group.

 

Hope to hear from you soon Judy,

Love and big hugs

From: Bonnie <tiredtazhotmail (DOT) com>

Subject: [ ] Re: New here

@gro ups.com

Date: Thursday, May 7, 2009, 8:28 PM

Judy,

I'm sorry to hear your not doing well, but I'm glad you found this list... I

tend to be very wishy washy with the list --- I'm active at times and then I

drop off until I remember just how much I need everyone and then once again

become active...

No one here is judgmental and many have sound advice.. others are just really

good listeners and just state that they understand and care... Anyway you look

at it, its comforting when your feeling lower then dirt and in so much pain you

only want to hide from those that can't possibly understand.

I also have most of my problems with my hands and wrists. The

swelling/inflammati on is the biggest problem. However, recently all the other

joints are feeling jealous and trying to jump in on the action... Ugh! I have

yet to have any blood work positively point to any one real problem, so for now

I'm diagnosed as having undifferentiated connective tissue disease... What a

mouthful.

My experience is that most of these auto-immune diseases play a big part with

our stress levels and nerves... The best idea (easier said then done) is to

control our emotions the best we can so that we don't pay the price later...

Hope you find it comfortable and warm here... Feel free to complain as we all

understand the need to vent once in awhile...

Take care

Bonnie

[Guest guest]

Hello. I am very new to the group. I have a 10y.o. son with autism. I just found

the information about Dr. Goldberg's treatment and would like to know how we

could start testing our son's immune system for disfunction? He is not the kid

who regressed at some age, I beleive he displayed neurological symptoms ever

since he was born. As a baby, he had some watery secret in his eye, which was

gone later. I give him Olive Leaf Extract recently, and his eye has that stuff

again, it's like slight conjuctivitis. His tests are always clean, no antibodies

to any infections. He is generally " healthy " , has 2-3flues during the season,

but never suffered any otitis or stomach viruses. We started GFCF diet, and this

winter he didn't have any flues, I think his immune status changed. I have

antibodies to herpes and CMV myself, but do not recall when I had these

infections, maybe as a teenager.

I read about the NeuroSCAN, and wonder, is it done under full anestisia? We made

MRI once, it came back normal, but we applied full sedation, which I later

learned was harmful to him.

I am researching how my son can be helped, and found the information on

Dr.Goldberg. I read about his approach to explainig autism as a neurodysfunction

of the brain. Now I am searching the ways he uses to treat autism. If someone

can direct me, I would be very greatful.

.