Re: Sick a long time but newly diagnosed with RA

[Guest guest]

Abby,

It's a shame that your previous doctors did not diagnose you and that

you've wound up with joint damage. I was lucky enough to go to a

wonderful rheumy who diagnosed me early on and started treatment. He

did diagnose me incorrectly in the beginning, but he soon realized his

mistake and made the correct diagnosis. In fact, I was diagnosed with

RA only 8 months from the time my symptoms started. And a few months

went by before I even went to a rheumy.

Sometimes it pays to be " the squeaky wheel. "

Sue

On Monday, October 16, 2006, at 01:25 PM, abbygrace9 wrote:

> Have any of you had this type of issue with diagnosis and a delayed

> appropriate treatment? I know autoimmune diseases are hard to pin

> down, but I still feel like the previous doctors missed it when they

> shouldn't have.

[Guest guest]

Hi,

I think you have every right to be very angry. It seems today especially if

we are women that we get ignored a lot or misdiagnosed, sometimes this mistake

can even be fatal. I agree we have to be the squeaky wheel in order to get the

proper medical attention that we require. I am sorry you have to have so many

joint replacements due to their error. I am glad you finally found a rheumy who

seems to be on the ball, just sorry it took so long. I wish there were

something more we could do about the healthcare system so that they did not blow

women off when they complain. I think we are pretty tough because after all we

do have the babies (LOL) and so we can take a LOT of pain. They need to

recognize and take us more seriously. I am not saying they don't overlook men

too sometimes, but statistically I have read articles that say time and again

doctors are more often likely to take a man's complaints more seriously than a

womens. My oldest has decided to become a

doctor because of this injustice. She wants better care for her mom and others

like her (isn't she sweet?).

Good luck and take care. VENT THAT ANGER! I think you have a right. You are

the one going through all the surgeries after all not to mention the expense as

well.

Tracie

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

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[Guest guest]

Hello Abby! I'm sorry to hear that you've had such a rough time getting

diagnosed. Hopefully this Rheumatologist has got it right and will get you on

some medicine to help slow this down. I'm new to all of this and have not

gotten a " proper " diagnosis as of yet (my Rheumatologist is sending me for a 2nd

opinion) but he did tell me to make sure that I take calcium supplements while

on the steroids. I believe that long term steroid use can cause bone loss and

what not so maybe this is something you can do if you aren't already - can't

hurt right?

Hope you feel better soon!

Lori

http://users.adelphia.net/~tmihalko/Stitching/index.html

[ ] Sick a long time but newly diagnosed with RA

I've been to five different rheumatologists in the past 8 years (my

insurance plan kept changing), and my most recent rheumy diagnosed

me with seronegative RA. Other rheumys said mild lupus or UCTD. At

first I was relieved that someone finally hit a diagnosis that seems

to fit my symptoms and test results, but now I'm feeling a little

angry that the other rheumys didn't pick up on it.

I've been on prednisone for 5 years, but my current rheumy started

me on methotrexate and is weaning me off the prednisone. I should

have been put on methotrexate years ago, and perhaps it would've

prevented some of the joint damage I've had. I've had one knee

totally replaced (the other knee needs it, too), surgery on my foot,

and surgery on my shoulder -- all because of joint damage. I may now

also need surgery on my spine.

My new doctor said prednisone contributes to joint damage, and as I

mentioned, I've been taking it for 5 years.

Have any of you had this type of issue with diagnosis and a delayed

appropriate treatment? I know autoimmune diseases are hard to pin

down, but I still feel like the previous doctors missed it when they

shouldn't have.

Thanks for having me in your group,

Abby Grace

[Guest guest]

I have had similar treatment but the RA factor shows up along with

elevated sed rate which is often around 125.

(the hands are not well so will type in lower case)

I had just left my job in transition from one state to another when

RA showed up. it presented right away in the large joints, my

shoulder, then a hand and then both feet. i went to the er, many

vials of blood taken, medical card number given, i was told it was

polyarthritis and sent home with a bottle of ibuprofen. no referral.

no explanation of what to expect later. whether it was serious,

permanent, what? when i called back to get the blood test results

they didn't remember me and had no record of me.

i didn't get another flare until much later but general mild pain

persisted and i knew i could just purchase advil for ibuprofen and

that's what i did. a year later in another state i got a flare and

went to urgent care, this time with insurance from work, there i was

given the diagnosis of ra. a very concerned er doc gave me a

referral to an rheumatologist who treated the condition with higher

and higher doses of relafen and later naprosyn. I left him went to

another rheumatologist who gave me plaquenil and my first of many

doses of prednisone.

so a lot of time went by before actually getting a dx or aggressive

treatment. leaving me really feeling as if i had to be my own doctor.

and now i am told it might not even be RA but lupus or overlapping of

other autoimmune conditions by the 5th rheumatologist's assistant

recently. i'll know more later. i know i don't have enough tears to

cry, so that's one condition. my hips have OA from prednisone i am

sure, etc. so 11 years later still no concrete therapy that works or

a doctor who can slow down long enough to listen.

hopefully this is the doc for you and he gets to the bottom of things

and get them under control.

peace and healing,

Ebony

--- In , " abbygrace9 " <abbygrace9@...>

wrote:

>

> I've been to five different rheumatologists in the past 8 years (my

> insurance plan kept changing), and my most recent rheumy diagnosed

> me with seronegative RA. Other rheumys said mild lupus or UCTD. At

> first I was relieved that someone finally hit a diagnosis that

seems

> to fit my symptoms and test results, but now I'm feeling a little

> angry that the other rheumys didn't pick up on it.

>

> I've been on prednisone for 5 years, but my current rheumy started

> me on methotrexate and is weaning me off the prednisone. I should

> have been put on methotrexate years ago, and perhaps it would've

> prevented some of the joint damage I've had. I've had one knee

> totally replaced (the other knee needs it, too), surgery on my

foot,

> and surgery on my shoulder -- all because of joint damage. I may

now

> also need surgery on my spine.

>

> My new doctor said prednisone contributes to joint damage, and as I

> mentioned, I've been taking it for 5 years.

>

> Have any of you had this type of issue with diagnosis and a delayed

> appropriate treatment? I know autoimmune diseases are hard to pin

> down, but I still feel like the previous doctors missed it when

they

> shouldn't have.

>

> Thanks for having me in your group,

> Abby Grace

>