Re: Test results negative... now what?

[Guest guest]

What were you thyroid numbers? Anemia..did they run ferritin? That is the

blood stores, you body goes there first.

Has your doctor looked at PA?

Kate G

At 04:48 PM 12/12/2006, you wrote:

>Hi, I'm Amy. I read the posts every day and appreciate all the

>information. Had the blood tests done for RA last week -- have felt

>really good for 3 weeks now, hands only hurt a little, not so tired.

>The test results ALL came back normal. They ran the whole battery of

>typical RA tests, thyroid, anemia, etc. Nothing at all.

>

>I feel really frustrated -- I know I SHOULD be thrilled that I don't

>have RA based on these test results... but then how do I explain my

>joint pain and swelling knuckles... the deep fatigue and headaches...

>the gut feeling that something is truly wrong physically?

>

>Without answers, I know I will feel guilty every time I'm " flaring " --

>like maybe it's just in my head.

>

>Has anyone dealt with this? Should I wait until I feel worse (which I

>expect to at some point) and then go back to the doctor, or do these

>test results truly rule out RA?

>

>Thanks in advance!

>

>

>

>

[Guest guest]

Hi Amy

I read what you posted. Your situation sounds just like mine. All of the

blood tests I have had have also come back fine. The inflammation test was

slightly high but other then that everything was fine. Did you have a bone

density test? I have been on plaquenil for about 3-4 weeks. They say it takes

up to 12 weeks to work, but I feel really good now. I understand the feeling of

having good blood tests. Does both hands hurt? So far I have only had trouble

with one hand........good luck.......Tim

sparkleshinegals <sparklegals1@...> wrote:

Hi, I'm Amy. I read the posts every day and appreciate all the

information. Had the blood tests done for RA last week -- have felt

really good for 3 weeks now, hands only hurt a little, not so tired.

The test results ALL came back normal. They ran the whole battery of

typical RA tests, thyroid, anemia, etc. Nothing at all.

I feel really frustrated -- I know I SHOULD be thrilled that I don't

have RA based on these test results... but then how do I explain my

joint pain and swelling knuckles... the deep fatigue and headaches...

the gut feeling that something is truly wrong physically?

Without answers, I know I will feel guilty every time I'm " flaring " --

like maybe it's just in my head.

Has anyone dealt with this? Should I wait until I feel worse (which I

expect to at some point) and then go back to the doctor, or do these

test results truly rule out RA?

Thanks in advance!

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[Guest guest]

>

Amy, 3 months ago I could have written your post. I have just been

diagnosed with seronegative RA. It was a really long and frustrating

road. My suggestion is to talk to your doctor about how you are

feeling...if you don't like what he/she has to say, see someone

else. It is hard for us non-medical people to do, but we need to

remember that doctors really do work for us...we pay them...and they

should listen to us instead of making us feel like we are crazy.

((((hugs))))

I hope you find some answers soon!

> Hi, I'm Amy. I read the posts every day and appreciate all the

> information. Had the blood tests done for RA last week -- have

felt

> really good for 3 weeks now, hands only hurt a little, not so

tired.

> The test results ALL came back normal. They ran the whole battery

of

> typical RA tests, thyroid, anemia, etc. Nothing at all.

>

> I feel really frustrated -- I know I SHOULD be thrilled that I

don't

> have RA based on these test results... but then how do I explain

my

> joint pain and swelling knuckles... the deep fatigue and

headaches...

> the gut feeling that something is truly wrong physically?

>

> Without answers, I know I will feel guilty every time

I'm " flaring " --

> like maybe it's just in my head.

>

> Has anyone dealt with this? Should I wait until I feel worse

(which I

> expect to at some point) and then go back to the doctor, or do

these

> test results truly rule out RA?

>

> Thanks in advance!

>

[Guest guest]

Amy,

Did they do the anti-CCP? ANA? Did you have any imaging of your hands and/or

feet done?

At the moment, no blood tests alone can rule RA in or out. Your clinical

presentation is very important.

Are you seeing a rheumatologist?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Test results negative... now what?

> Hi, I'm Amy. I read the posts every day and appreciate all the

> information. Had the blood tests done for RA last week -- have felt

> really good for 3 weeks now, hands only hurt a little, not so tired.

> The test results ALL came back normal. They ran the whole battery of

> typical RA tests, thyroid, anemia, etc. Nothing at all.

>

> I feel really frustrated -- I know I SHOULD be thrilled that I don't

> have RA based on these test results... but then how do I explain my

> joint pain and swelling knuckles... the deep fatigue and headaches...

> the gut feeling that something is truly wrong physically?

>

> Without answers, I know I will feel guilty every time I'm " flaring " --

> like maybe it's just in my head.

>

> Has anyone dealt with this? Should I wait until I feel worse (which I

> expect to at some point) and then go back to the doctor, or do these

> test results truly rule out RA?

>

> Thanks in advance!

[Guest guest]

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

wrote:

>

> Amy,

>

> Did they do the anti-CCP? ANA? Did you have any imaging of your

hands and/or

> feet done?

>

> At the moment, no blood tests alone can rule RA in or out. Your

clinical

> presentation is very important.

>

> Are you seeing a rheumatologist?

>

>

>

> Not an MD

>

Thanks everyone, I really needed some guidance about what to do

next.

They did run the anti-CCP and ANA, no imaging. Just called for the

numbers -- ANA 17, anti-CCP negative, thyroid .917, anemia 30. I

don't know what the heck that means though. <g>

OF COURSE I was feeling really well when I went in both times. I've

been great for 3 weeks. But I just know it will cycle around again --

the pain is not gone, just lessened. I can tell as I prepare for

Christmas with 4 kids and my business that the RA (or whatever?) is

taking its toll.

I haven't yet seen a rheumatologist -- we have a large deductible and

I would have to pay out of pocket for it. I guess I want to prove to

myself that it's back before I go that route. My DH liked the

suggestion I found on this board about taking pictures of the

inflammation. Mine seems most prevalent in my right hand (stiffness

and soreness never quite go away, not always visibly swollen

though). This last round my elbows, knees, hips, ankles, and even

the small bones on the tops of my feet hurt. I also noticed that the

tips of my fingers and toes felt pins and needles all the time.

Sometimes I'm BEYOND tired, more tired even than when my 2 youngest

were babies and I had no sleep for a year!!

What is PA? If there is anything else I should have them check for --

please let me know.

Thank you again for the encouragement to continue searching for

answers -- I really need that. Thankfully my nurse practitioner (who

had the tests run) and my husband are being very supportive and not

treating me like I'm crazy... but I am struggling with it

nonetheless.

amy

[Guest guest]

Thyroid? TSH? Anemia? Ferritin? WBC? RBC?

I'd ask for a copy of the labs, then you know what they really tested. TSH

is a pituitary test NOT a thyroid test. Your Free T4 and Free T3 need to

be tested too. If you are not on thyroid meds and your TSH and Frees are

low then you might have something going on with your pituitary gland too.

PA is psoriatic arthritis.

Kate

>Thanks everyone, I really needed some guidance about what to do

>next.

>They did run the anti-CCP and ANA, no imaging. Just called for the

>numbers -- ANA 17, anti-CCP negative, thyroid .917, anemia 30. I

>don't know what the heck that means though. <g>

>OF COURSE I was feeling really well when I went in both times. I've

>been great for 3 weeks. But I just know it will cycle around again --

> the pain is not gone, just lessened. I can tell as I prepare for

>Christmas with 4 kids and my business that the RA (or whatever?) is

>taking its toll.

>

>I haven't yet seen a rheumatologist -- we have a large deductible and

>I would have to pay out of pocket for it. I guess I want to prove to

>myself that it's back before I go that route. My DH liked the

>suggestion I found on this board about taking pictures of the

>inflammation. Mine seems most prevalent in my right hand (stiffness

>and soreness never quite go away, not always visibly swollen

>though). This last round my elbows, knees, hips, ankles, and even

>the small bones on the tops of my feet hurt. I also noticed that the

>tips of my fingers and toes felt pins and needles all the time.

>Sometimes I'm BEYOND tired, more tired even than when my 2 youngest

>were babies and I had no sleep for a year!!

>

>What is PA? If there is anything else I should have them check for --

> please let me know.

>

>Thank you again for the encouragement to continue searching for

>answers -- I really need that. Thankfully my nurse practitioner (who

>had the tests run) and my husband are being very supportive and not

>treating me like I'm crazy... but I am struggling with it

>nonetheless.

>

>

>amy

>

>

>

>

[Guest guest]

Hi Amy,

I recently went through a similar thing, in July. I got symptoms of severse

sudden onset of RA, my GP immediaely put me on 50mg of pred, and the pain went

away within a day almost completely. I had blood tests, but only had slightly

elevated Rheumatoid levels. Since then I have twice tested negative (all the

different tests). I saw my first Rheumy in August, who basically said I there

was nothing wrong with me, and that I should get on with it. I say another

Rheumy 2 months later who diagnoised me with Sera Negative RA. It's a very

confusing time. Other people don't understand how you just want a diagnosis,

good or bad. They think you should be happy that you've been told you do not

have RA, and of course you would be, if you didn't hurt so much, and of course

you think, ok, if it;s not RA what is it? I guess I was lucky to find a really

understanding Rheumy fairly early in my journey, and my sudden onset made

diagnosis easier. Good luck with it all. I hope they

find out what is wrong with you soon. The good Rheummy that I saw did say that

sometimes a type of temporary arthritis that mimics RA is brought about by a

virus (often Parvo Virus, the same as the dogs get). My Rheummy thinks that I

have had this for too long now, 5 months for it to be temporary, but maybe yours

is, (here's hoping). Best of luck, hope you get the right diagnosis for

Christmas.

Pennie

[ ] Test results negative... now what?

Hi, I'm Amy. I read the posts every day and appreciate all the

information. Had the blood tests done for RA last week -- have felt

really good for 3 weeks now, hands only hurt a little, not so tired.

The test results ALL came back normal. They ran the whole battery of

typical RA tests, thyroid, anemia, etc. Nothing at all.

I feel really frustrated -- I know I SHOULD be thrilled that I don't

have RA based on these test results... but then how do I explain my

joint pain and swelling knuckles... the deep fatigue and headaches...

the gut feeling that something is truly wrong physically?

Without answers, I know I will feel guilty every time I'm " flaring " --

like maybe it's just in my head.

Has anyone dealt with this? Should I wait until I feel worse (which I

expect to at some point) and then go back to the doctor, or do these

test results truly rule out RA?

Thanks in advance!

Send instant messages to your online friends http://au.messenger.

[Guest guest]

I was also misdiagnosed for 8 months and my Rheumy is

still not convinced that I have lupus, eventhough I

have all of the bloodwork positive and the symptoms.

I didn't used to. It's very frustrating and even the

best scientists do not understand at all why you want

to be diagnosed...with something!! Then people start

thinking that you're a hypochondriac and it just makes

you want to scream.

Tara

--- Pennie Kellett <penniepincher66@...>

wrote:

> Hi Amy,

> I recently went through a similar thing, in July. I

> got symptoms of severse sudden onset of RA, my GP

> immediaely put me on 50mg of pred, and the pain went

> away within a day almost completely. I had blood

> tests, but only had slightly elevated Rheumatoid

> levels. Since then I have twice tested negative

> (all the different tests). I saw my first Rheumy in

> August, who basically said I there was nothing wrong

> with me, and that I should get on with it. I say

> another Rheumy 2 months later who diagnoised me with

> Sera Negative RA. It's a very confusing time.

> Other people don't understand how you just want a

> diagnosis, good or bad. They think you should be

> happy that you've been told you do not have RA, and

> of course you would be, if you didn't hurt so much,

> and of course you think, ok, if it;s not RA what is

> it? I guess I was lucky to find a really

> understanding Rheumy fairly early in my journey, and

> my sudden onset made diagnosis easier. Good luck

> with it all. I hope they

> find out what is wrong with you soon. The good

> Rheummy that I saw did say that sometimes a type of

> temporary arthritis that mimics RA is brought about

> by a virus (often Parvo Virus, the same as the dogs

> get). My Rheummy thinks that I have had this for

> too long now, 5 months for it to be temporary, but

> maybe yours is, (here's hoping). Best of luck, hope

> you get the right diagnosis for Christmas.

>

> Pennie

>

>

> [ ] Test results negative... now

> what?

>

> Hi, I'm Amy. I read the posts every day and

> appreciate all the

> information. Had the blood tests done for RA last

> week -- have felt

> really good for 3 weeks now, hands only hurt a

> little, not so tired.

> The test results ALL came back normal. They ran the

> whole battery of

> typical RA tests, thyroid, anemia, etc. Nothing at

> all.

>

> I feel really frustrated -- I know I SHOULD be

> thrilled that I don't

> have RA based on these test results... but then how

> do I explain my

> joint pain and swelling knuckles... the deep fatigue

> and headaches...

> the gut feeling that something is truly wrong

> physically?

>

> Without answers, I know I will feel guilty every

> time I'm " flaring " --

> like maybe it's just in my head.

>

> Has anyone dealt with this? Should I wait until I

> feel worse (which I

> expect to at some point) and then go back to the

> doctor, or do these

> test results truly rule out RA?

>

> Thanks in advance!

>

>

>

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

>

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[Guest guest]

I so agree with you I myself has had to fight 3 fights one 27 years ago I had

endrometros it took 3 years and three doctors with me fighting each step for

them to find it. This year I kept asking for a thyroid test finally they did

one and then I asked for the autoimmune test I was right I had Hashimoto's

disease then I had to fight for the right medication they said wouldn't work,

which of course does. 3 months ago my fingers started really hurting and my

ankles swelled up one doctor gave me water pills but my RA doctor knew what it

was and my shoulder are bad I can not stand someone even touching them. I was

glad to find a doctor that was understanding and guess what he has thyroid

problems and gives me presciption for my thyroid meds. I actually got my own

thyroid meds outside the country to get healthy I do not have to anymore and the

meds are made in my town go figure!

Sorry it is so flustrating to me the first thing they wanted to do is put me

on antidepressants at the time I took it because I thought I was going nuts

until I found my thyroid problem I am now off of them.

Thank you for letting me vent I think it was building up inside of me.

Marsha

tara stine <dougsbeautifulbaby@...> wrote:

I was also misdiagnosed for 8 months and my Rheumy is

still not convinced that I have lupus, eventhough I

have all of the bloodwork positive and the symptoms.

I didn't used to. It's very frustrating and even the

best scientists do not understand at all why you want

to be diagnosed...with something!! Then people start

thinking that you're a hypochondriac and it just makes

you want to scream.

Tara

--- Pennie Kellett <penniepincher66@...>

wrote:

> Hi Amy,

> I recently went through a similar thing, in July. I

> got symptoms of severse sudden onset of RA, my GP

> immediaely put me on 50mg of pred, and the pain went

> away within a day almost completely. I had blood

> tests, but only had slightly elevated Rheumatoid

> levels. Since then I have twice tested negative

> (all the different tests). I saw my first Rheumy in

> August, who basically said I there was nothing wrong

> with me, and that I should get on with it. I say

> another Rheumy 2 months later who diagnoised me with

> Sera Negative RA. It's a very confusing time.

> Other people don't understand how you just want a

> diagnosis, good or bad. They think you should be

> happy that you've been told you do not have RA, and

> of course you would be, if you didn't hurt so much,

> and of course you think, ok, if it;s not RA what is

> it? I guess I was lucky to find a really

> understanding Rheumy fairly early in my journey, and

> my sudden onset made diagnosis easier. Good luck

> with it all. I hope they

> find out what is wrong with you soon. The good

> Rheummy that I saw did say that sometimes a type of

> temporary arthritis that mimics RA is brought about

> by a virus (often Parvo Virus, the same as the dogs

> get). My Rheummy thinks that I have had this for

> too long now, 5 months for it to be temporary, but

> maybe yours is, (here's hoping). Best of luck, hope

> you get the right diagnosis for Christmas.

>

> Pennie

>

>

> [ ] Test results negative... now

> what?

>

> Hi, I'm Amy. I read the posts every day and

> appreciate all the

> information. Had the blood tests done for RA last

> week -- have felt

> really good for 3 weeks now, hands only hurt a

> little, not so tired.

> The test results ALL came back normal. They ran the

> whole battery of

> typical RA tests, thyroid, anemia, etc. Nothing at

> all.

>

> I feel really frustrated -- I know I SHOULD be

> thrilled that I don't

> have RA based on these test results... but then how

> do I explain my

> joint pain and swelling knuckles... the deep fatigue

> and headaches...

> the gut feeling that something is truly wrong

> physically?

>

> Without answers, I know I will feel guilty every

> time I'm " flaring " --

> like maybe it's just in my head.

>

> Has anyone dealt with this? Should I wait until I

> feel worse (which I

> expect to at some point) and then go back to the

> doctor, or do these

> test results truly rule out RA?

>

> Thanks in advance!

>

>

>

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Need a quick answer? Get one in minutes from people who know.

Ask your question on www.Answers.