Re: Doctor Did A Turnaround... Is this common?

[Guest guest]

Hey barbara. I was recenlt diagnosed with RA and had pos ANA all the other test

were neg. My rheumy diagnosed me with seronegative RA which is when u have a

negative RA factor. I have been started on treatment and feel much better. You

really need to see a good rheumy. Good luck!

Vicky

Sent from my Verizon Wireless BlackBerry

[ ] Doctor Did A Turnaround... Is this common?

Hello everyone! I hope you all are having a good day. I'm new here, so I'd

like to give a little background info if that's ok.

15 years ago I began having trouble with my hands and other random joints in my

body. My PCP said " rheumatoid arthritis " (especially w/ the family history) and

ordered blood work. When it came back negative for the rheumatoid factor and

the C-reactive marker he said it must be carpal tunnel since I don't have

rheumatoid arthritis. (My family had already told me I was starting out just

like my aunt). I accepted the dx, had surgery, and did ok except for a few

flare-ups every 4 or 5 months or so for the next 10 years. Every 2 years or so

I stiffen up in my whole body so bad that my husband has to feed me! My PCP

said these flareups were tendonitis. This continued every 3 or 4 months for the

next 10 years with just about every diagnosis under the sun (tendonitis a few

times, carpal tunnel, strains/sprains, osteoarthritis, anxiety, adrenaline

problems,etc.) I've paid for MRI's, X-rays, blood work, etc.

2 months ago I go to see my new PCP. He looks at the crooked fingers, the hot

and puffy wrists, the obvious knots on my wrists and listens as I explain all of

my symptoms (the extreme and debilitating fatigue, morning stiffness for about

an hour, progressive pain and weakness in the joints)and says " rheumatoid

arthritis " . He did my blood work (which came back negative again) and said even

though my blood work shows no markers he still thinks it's rheumatoid. He

prescribes steroids which help a little, but make me so sick I can only take

them for 2 weeks because my job was in jeopardy.

Yesterday I saw him. He looks back through my files and says it's NOT

rheumatoid because my blood work came back negative. I reminded him what he

said last time, tell him all the symptoms, then tell him I can no longer rotate

my wrists or use my thumbs independently. They are very bumpy now and are

swollen and burning constantly and feel like things are " rubbing together " . He

says it's de quervain's tendonitis and I have to see a hand specialist. <sigh>

Granted, the majority of the pain I have is in the thumb joints and wrists, but

my right knee, left shoulder, both hips, ankles, and toe joints are having the

same pain only to a lesser degree. I'm assuming because I sit in a chair all day

and use my hands for 9 hours straight, 48 hours a week, in addition to

housework, cooking, caring for my disabled husband and son and 2 dogs and caring

for my disabled father who lives alone. I do his shopping, housework, and

maintenance around his house.

I'm seriously thinking about saving up to see a rheumy, but I've been told that

they often misdiagnose for a few years until the obvious deformity shows up. My

PCP has seen the deformity but..... I have no insurance and work as a

subcontractor, so I'm responsible for paying my own SS & medicare taxes at the

end of the year (around $3,000.00). I only make $9.00 an hour to start with (as

an office manager - go figure).

My question is this: Is this common? And does anyone know how to talk to a

rheumy to make him really pay attention and diagnose correctly? I'm going to be

hard pressed to come up with the initial office visit fee and I don't want to

have to spend thousands of dollars just to get a diagnosis and the meds I need.

My family simply can't spare the money. I've been told that you have to " catch "

rheumatoid in a certain stage of the flareup for the markers to be there.

Please don't get me wrong. I do not WANT rheumatoid arthritis, but I also

don't want to end up bedridden or disabled and unable to support my family if I

should be on particular meds and aren't. I have a 13 year old son and a

disabled husband who cannot work, and I truly feel that if I don't get some kind

of help in the next few months that I will have to quit my job because of the

hand pain and stiffness. I can't sleep, I can't eat, and even the wrist bands

around my long-sleeve shirts are agony. I've had to reorganize my office and

situate things to make them easier on me, but it's becoming harder and harder to

hold a pen in my hand and even the twisting motion required to answer the phone

has become agony.

Sorry this is so long, but thank you for letting me get it out. I would

appreciate any comments anyone has. Also, if any of you see the symptoms I've

indicated and think it's NOT RA then I would appreciate that too. Like I said,

I don't want it (who would?) but I've seen what it can do at its worst and I'm

afraid of it. I like to be pro-active with my health care and, since I've had

so many different diagnoses over the years, I just want to get a firm diagnosis

and do something about it before it's too late to help my family.

Thank you so much!

Barbara

[Guest guest]

Hi Barbara...I am sorry to say that your story is more common than it ever

should be. MANY of us have been through a litany of diagnoses before it was

really settled down. I do hope you will see another rheumatologist and make

sure to have your records available. People here will be a great resource,

comfort and support.

Fondly,

Cheryle, in Oregon

[Guest guest]

Hello Group, My name is Phil and I am currently taking care of my wife whom has

had RA for 2 years now. We have been having a hard time with getting the right

cocktail of meds for her. I wanted to ask Vicky what she is currently on

beacause my wife is also sero-neg. I give her once a week Embrel with

little reliefe from the pain, swelling and progression. We have tried MTX and

she couldnt keep anything down in her stomach, not even a ice cube, so we

stopped that. The predisone would turn her into a psyco mad woman. So if there

is anyone alse who has sero-neg can tell us what the best combo of meds that

works at all. Thanks Group and Vicky...... Phil   Husband and stay at home nurse

[Guest guest]

Hi, Barbara. I'm sorry to read about your problems.

You need to see an excellent rheumatologist. It's possible to have

negative RF and anti-CCP and still have rheumatoid arthritis.

If you tell us your general location, someone in the group may be able

to give you the name of someone good.

Not an MD

On Sat, Dec 19, 2009 at 7:12 PM, mydogrunsmyhouse <bj_clegg@...> wrote:

> Hello everyone!  I hope you all are having a good day.  I'm new here, so I'd

like to give a little background info if that's ok.  

>

>  15 years ago I began having trouble with my hands and other random joints in

my body.  My PCP said " rheumatoid arthritis " (especially w/ the family history)

and ordered blood work.  When it came back negative for the rheumatoid factor

and the C-reactive marker he said it must be carpal tunnel since I don't have

rheumatoid arthritis.  (My family had already told me I was starting out just

like my aunt).  I accepted the dx, had surgery, and did ok except for a few

flare-ups every 4 or 5 months or so for the next 10 years.  Every 2 years or so

I stiffen up in my whole body so bad that my husband has to feed me!  My PCP

said these flareups were tendonitis. This continued every 3 or 4 months for the

next 10 years with just about every diagnosis under the sun (tendonitis a few

times, carpal tunnel, strains/sprains, osteoarthritis, anxiety, adrenaline

problems,etc.) I've paid for MRI's, X-rays, blood work, etc.

>

>  2 months ago I go to see my new PCP.  He looks at the crooked fingers, the

hot and puffy wrists, the obvious knots on my wrists and listens as I explain

all of my symptoms (the extreme and debilitating fatigue, morning stiffness for

about an hour, progressive pain and weakness in the joints)and says " rheumatoid

arthritis " .  He did my blood work (which came back negative again) and said even

though my blood work shows no markers he still thinks it's rheumatoid.  He

prescribes steroids which help a little, but make me so sick I can only take

them for 2 weeks because my job was in jeopardy.

>

>  Yesterday I saw him.  He looks back through my files and says it's NOT

rheumatoid because my blood work came back negative.  I reminded him what he

said last time, tell him all the symptoms, then tell him I can no longer rotate

my wrists or use my thumbs independently.  They are very bumpy now and are

swollen and burning constantly and feel like things are " rubbing together " .  He

says it's de quervain's tendonitis and I have to see a hand specialist.  <sigh>

 Granted, the majority of the pain I have is in the thumb joints and wrists, but

my right knee, left shoulder, both hips, ankles, and toe joints are having the

same pain only to a lesser degree. I'm assuming because I sit in a chair all day

and use my hands for 9 hours straight, 48 hours a week, in addition to

housework, cooking, caring for my disabled husband and son and 2 dogs and caring

for my disabled father who lives alone.  I do his shopping, housework, and

maintenance around his house.

>

>  I'm seriously thinking about saving up to see a rheumy, but I've been told

that they often misdiagnose for a few years until the obvious deformity shows

up.  My PCP has seen the deformity but.....  I have no insurance and work as a

subcontractor, so I'm responsible for paying my own SS & medicare taxes at the

end of the year (around $3,000.00).  I only make $9.00 an hour to start with (as

an office manager - go figure).

>

>  My question is this:  Is this common?  And does anyone know how to talk to a

rheumy to make him really pay attention and diagnose correctly?  I'm going to be

hard pressed to come up with the initial office visit fee and I don't want to

have to spend thousands of dollars just to get a diagnosis and the meds I need.

 My family simply can't spare the money.  I've been told that you have to

" catch " rheumatoid in a certain stage of the flareup for the markers to be

there.

>

>  Please don't get me wrong.  I do not WANT rheumatoid arthritis, but I also

don't want to end up bedridden or disabled and unable to support my family if I

should be on particular meds and aren't.  I have a 13 year old son and a

disabled husband who cannot work, and I truly feel that if I don't get some kind

of help in the next few months that I will have to quit my job because of the

hand pain and stiffness.  I can't sleep, I can't eat, and even the wrist bands

around my long-sleeve shirts are agony.  I've had to reorganize my office and

situate things to make them easier on me, but it's becoming harder and harder to

hold a pen in my hand and even the twisting motion required to answer the phone

has become agony.

>

>  Sorry this is so long, but thank you for letting me get it out.  I would

appreciate any comments anyone has.  Also, if any of you see the symptoms I've

indicated and think it's NOT RA then I would appreciate that too.  Like I said,

I don't want it (who would?) but I've seen what it can do at its worst and I'm

afraid of it.  I like to be pro-active with my health care and, since I've had

so many different diagnoses over the years, I just want to get a firm diagnosis

and do something about it before it's too late to help my family.

>

>  Thank you so much!

>

> Barbara

[Guest guest]

Hi Phil-  I had the same problem with the MTX but then they switched me to the

injectable form, I give myself a shot once week and it doesn't bother my

stomach, I am also on plaquenil and diclofenac(anti-inflammatory) and 5mg of

prednisone, I am very irritable on the prednisone but the lower dosages do not

bother me as bad plus i started on an anti-depressant which helped with it the

irritability as well. I also have changed my diet, there is a good magazine

called arthritis today that has a lot of good tips, avoiding carbs and

" boxed " foods really helps. I also have a a prescription for lortab if the pan

gets real bad, which is rare these days, I hope this helps and if you have any

more questions let me know, hope your wife gets to feeling better! 

Vicky 

From: Philip Westfall <phl300@...>

Subject: Re: [ ] Doctor Did A Turnaround... Is this common?

Date: Sunday, December 20, 2009, 8:22 AM

 

Hello Group, My name is Phil and I am currently taking care of my wife

whom has had RA for 2 years now. We have been having a hard time with getting

the right cocktail of meds for her. I wanted to ask Vicky what she is currently

on beacause my wife is also sero-neg. I give her once a week Embrel with

little reliefe from the pain, swelling and progression. We have tried MTX and

she couldnt keep anything down in her stomach, not even a ice cube, so we

stopped that. The predisone would turn her into a psyco mad woman. So if there

is anyone alse who has sero-neg can tell us what the best combo of meds that

works at all. Thanks Group and Vicky...... Phil   Husband and stay at home

nurse

[Guest guest]

Hi Phil,

I'm sero neg and I've been on mtx from the beginning with great results. Did

you try the iv mtx? I was on Remicade for a year with mtx but that didn't work

out for me so I'm back to the mtx. Don't think I'm knocking Remicade, I know a

few people on it personally who do great on it.

in PA

Re: [ ] Doctor Did A Turnaround... Is this common?

Hello Group, My name is Phil and I am currently taking care of my wife whom

has had RA for 2 years now. We have been having a hard time with getting the

right cocktail of meds for her. I wanted to ask Vicky what she is currently on

beacause my wife is also sero-neg. I give her once a week Embrel with

little reliefe from the pain, swelling and progression. We have tried MTX and

she couldnt keep anything down in her stomach, not even a ice cube, so we

stopped that. The predisone would turn her into a psyco mad woman. So if there

is anyone alse who has sero-neg can tell us what the best combo of meds that

works at all. Thanks Group and Vicky...... Phil Husband and stay at home nurse