questions about ra and lupus - new member

[Guest guest]

Hi Jodi

Welcome to the group. I don't post that often but I noticed your request. It

took almost 5 years to get an accurate diagnosis for me. The doctor said I had

fibro, then lupus, finally RA (after I actually suffered some damage to my

joints). So many illnesses/conditions are similar, it really does take awhile to

figure it out.

Take Care

Babs

[Guest guest]

Hi Jodi...I was dx with sero negative lupus/mixed connective tissue disease in

1980. The rheumatologists did not 'settle' on rheumatoid arthritis until 1998

or so, and still talk about some other dx's. I had all the symptoms you

mentioned...the hands 'falling asleep' turned out to be carpal tunnel for me,

and surgery fixed both 100%. But all the rest were ever present. I know it is

discouraging to not know what in the world is going on. Sadly, that seems to be

the norm with many autoimmune diseases...it often takes years to have a definite

dx. That doesn't mean that you cannot receive some effective treatments,

though. You 'just' need a really good rheumatologist. My very best to you on

this journey.

Gentle hugs...

Tess

[Guest guest]

Jodi

I think I am one of the rare ones, as I was DX with RA bout 5 years ago.

It only took me a couple of months for a DC, but that was because I was going

into kidney failure from vioxx.( taking for OA) They discovered the RA almost

by accident because they were testing actually for lupus at the time. Actual I

was first DX by a kidney specialist who than sent me to a rheumy. Actually that

one time is the only time I have ever tested positive for RA. Every Ana test

since then has come up negative. My rheumy says I have ser0-negative RA, about

20% of RA patients have this form. I also have interstitial fibrosis caused by

RA in the lungs.

So I guess what I am saying is we all have our story, and they all are

different. in WI

Grammi B <grammi_love@...> wrote:

Hi Jodi...I was dx with sero negative lupus/mixed connective tissue

disease in 1980. The rheumatologists did not 'settle' on rheumatoid arthritis

until 1998 or so, and still talk about some other dx's. I had all the symptoms

you mentioned...the hands 'falling asleep' turned out to be carpal tunnel for

me, and surgery fixed both 100%. But all the rest were ever present. I know it

is discouraging to not know what in the world is going on. Sadly, that seems to

be the norm with many autoimmune diseases...it often takes years to have a

definite dx. That doesn't mean that you cannot receive some effective

treatments, though. You 'just' need a really good rheumatologist. My very best

to you on this journey.

Gentle hugs...

Tess

[Guest guest]

I have a negative rheumatoid factor and have Rheumatoid Arthritis. I think

my Rheumatoid factor was positive when I was diagnosed when I was 10, but it

is negative now and I feel worse now, so that is not the factor of pain

level for me! My knuckles, wrists, toes, feet and ankles all swell up,

itch, hurt and get stiff.

Love and Peace,

Semalee

My Blog:

http://jellodoesntnail.blogspot.com

My webpage:

http://360./considerablewellness

Words to live by:

" A meaningful life will not be found in the next job or the next car. The

way you get meaning in your life is to devote yourself to helping others and

creating something that gives you purpose. "

Morrie Schwartz

_____

From: [mailto: ] On

Behalf Of Jodi

Sent: Friday, July 07, 2006 7:19 AM

Subject: [ ] questions about ra and lupus - new member

Good morning everyone,

I posted a message a week or so ago, and I did not get a response, so

I thought I would try again.

My rheumatologist says I have arthritis, but he is not sure what type

of arthritis. I was wondering how long most of you waited for a

specific diagnosis.

My doctor is not ruling anything out. Both my rheumatoid factor and

ANA tests are negative. Has anyone received a diagnosis or rheumatoid

arthritis or lupus with negative blood tests? Can the tests change

over time?

Besides joint pain and fatigue has anyone experienced skin rashes,

hands falling asleep, intermittent sore throat and fever and constant

swelling in feet, ankles and hands?

Thanks for your time.

Jodi