Re: Misdiagnosed? RA with NO swelling or hot joints???

[Guest guest]

I don't think you have RA, but I had RA for a year before there was visible

swelling.  My joints have never been warm in the 13 years I have had it.  So

with that said, the absence of swelling and warmth means nothing in early RA

diagnosis especially.  The delay in swelling and the absence of warmth didn't

keep me from getting two new knees last month...it catches up to ya!

 

I don't think it is neuropathy either.  My son's A1C when he was diagnosed with

Type 1 Diabetes a few years ago (he was 10 at the time) was 11.8.  You generally

need much longer elevations to cause long term diabetic neuropathy.

 

What I do think your body is is ran down.  You have three children age 5 and

under, had a complicate pregnancy, had pneumonia!, and suffered through side

effects of that.  Did the doctors rerun blood work after your course of

antibiotics to see if there was any change?  Pneumonia could explain the sed

rate and the rheumatoid factor.  Not to say that it is impossible that you have

RA, none of us can say that, but you definitely do not have the classic early

symptoms...and you have so many other things that can explain why you are

feeling the way you are.

 

With the feet, it could be stress, it could be back (pinched nerves or bulging

disks) or gait problems.  Have you tried support stockings?  Do they feel better

or worse after rest?  Does ice or heat help?  If you try the conventional

methods and you are to the point of getting no relief I would definitely press

harder for answers.

 

Shandi

From: coops1mom <welshclan@...>

Subject: [ ] Misdiagnosed? RA with NO swelling or hot joints???

Date: Tuesday, August 19, 2008, 8:16 PM

I have an appointment with my Rheumy on Thursday and I am going to

talk with her about what else could be going on with me. I started

Plaqunil generic about six months ago and my symptoms have only gotten

worse. Let me start at the beginning...

Ten months ago I went to my family doc because I was having SERIOUS

fatigue. Granted I had a 12 month old, a 2 1/2 year old and a 5 year

old at the time, but I felt that my fatigue was unusual (my kids are

good sleepers thankfully). A few tests came back out of whack. Liver

enzymes were mildly elevated, Vitamin D levels were low (long time

breast feeder no wonder) and Esr was mildly elevated. Cortisol levels

and thyroid levels were all within " normal " limits, ANA neg, EBV neg.

It's important to note that after my first child was born I started

to experience sausage like sensations in my fingers and stiffness in

my feet. No swelling ever. These sensations have been with me for

over six years now. The family doc then ran the Rheumatoid Factor and

that was BARELY postive. So she referred me to a Rheumy and the

Rheumy did a chest xray to rule out sarcoidosis. Surprise! I had

pneumonia - with no symptoms (other than exhaustion) - no fever, no

cough and four different docs could not hear it with a stethescope.

My lymph nodes were painful at the time also. Was treated with a very

potent antibiotic (terrible side effects) and started plaquinil

generic about a month later for " early " stage RA.

So here's my question. What else could this be?? I haven't had any

swelling or hot joints. My energy level is ten times better than it

was six months ago and my lymph nodes no longer feel inflammed but

since starting the RA drug six months ago, the sausage sensation is

worse as are my feet. I have some burning sensations occasionaly but

not the horrific pain that so many of you experience.

Anyone else have RA WITHOUT swelling???

Another thought is possible neuropathy.. . as I had untreated

gestational diabetes during my last pregnancy ( I had a ten pound baby

that needed glucose and my A1C showed Type2 levels at my 6 week post

partum check up) LONG STORY...

Thank you all for your thoughts and experience.

Amber in , CA

[Guest guest]

Dear Shandi,

since you mentioned it, could you inform us which are the early

symptoms of RA ?

Thanks a lot,

>

> From: coops1mom <welshclan@...>

> Subject: [ ] Misdiagnosed? RA with NO swelling or hot

joints???

>

> Date: Tuesday, August 19, 2008, 8:16 PM

>

>

>

>

>

>

> I have an appointment with my Rheumy on Thursday and I am going to

> talk with her about what else could be going on with me. I started

> Plaqunil generic about six months ago and my symptoms have only

gotten

> worse. Let me start at the beginning...

>

> Ten months ago I went to my family doc because I was having SERIOUS

> fatigue. Granted I had a 12 month old, a 2 1/2 year old and a 5 year

> old at the time, but I felt that my fatigue was unusual (my kids are

> good sleepers thankfully). A few tests came back out of whack. Liver

> enzymes were mildly elevated, Vitamin D levels were low (long time

> breast feeder no wonder) and Esr was mildly elevated. Cortisol

levels

> and thyroid levels were all within " normal " limits, ANA neg, EBV

neg.

> It's important to note that after my first child was born I started

> to experience sausage like sensations in my fingers and stiffness in

> my feet. No swelling ever. These sensations have been with me for

> over six years now. The family doc then ran the Rheumatoid Factor

and

> that was BARELY postive. So she referred me to a Rheumy and the

> Rheumy did a chest xray to rule out sarcoidosis. Surprise! I had

> pneumonia - with no symptoms (other than exhaustion) - no fever, no

> cough and four different docs could not hear it with a stethescope.

> My lymph nodes were painful at the time also. Was treated with a

very

> potent antibiotic (terrible side effects) and started plaquinil

> generic about a month later for " early " stage RA.

>

> So here's my question. What else could this be?? I haven't had any

> swelling or hot joints. My energy level is ten times better than it

> was six months ago and my lymph nodes no longer feel inflammed but

> since starting the RA drug six months ago, the sausage sensation is

> worse as are my feet. I have some burning sensations occasionaly but

> not the horrific pain that so many of you experience.

>

> Anyone else have RA WITHOUT swelling???

>

> Another thought is possible neuropathy.. . as I had untreated

> gestational diabetes during my last pregnancy ( I had a ten pound

baby

> that needed glucose and my A1C showed Type2 levels at my 6 week post

> partum check up) LONG STORY...

>

> Thank you all for your thoughts and experience.

>

> Amber in , CA

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Amber - best of luck with your Rheumy tomorrow. I had pneumonia in

2005 and ended up in the hospital for 3-4 days with TWO IV

antibiotics and IV steroids, so I know its not fun. Hope you find

that is all cleared up. As far as the swelling goes, it was always my

assumption that even though you may not see a lot of visible swelling

(like when our feet swell towards the end of pregnancy), that sausage

finger feeling you mentioned indicates swelling. That's the way it is

for me anyhow and when I extend my fingers straight, you can see the

blanching white of the skin around my knuckles where there is

swelling in the joints. You could be in the early stages of the RA,

which would explain the burning sensations (I would call that hot

joints). Let us know how your visit with your rheumy goes. I wish you

all the best of luck......Doreen

>

> I have an appointment with my Rheumy on Thursday and I am going to

> talk with her about what else could be going on with me. I started

> Plaqunil generic about six months ago and my symptoms have only

> gotten worse. Let me start at the beginning...

>

> Ten months ago I went to my family doc because I was having SERIOUS

> fatigue. Granted I had a 12 month old, a 2 1/2 year old and a 5

> year old at the time, but I felt that my fatigue was unusual (my

> kids are good sleepers thankfully). A few tests came back out of

> whack. Liver enzymes were mildly elevated, Vitamin D levels were

> low (long time breast feeder no wonder) and Esr was mildly

> elevated. Cortisol levels and thyroid levels were all

> within " normal " limits, ANA neg, EBV neg.

> It's important to note that after my first child was born I started

> to experience sausage like sensations in my fingers and stiffness in

> my feet. No swelling ever. These sensations have been with me for

> over six years now. The family doc then ran the Rheumatoid Factor

> and that was BARELY postive. So she referred me to a Rheumy and the

> Rheumy did a chest xray to rule out sarcoidosis. Surprise! I had

> pneumonia - with no symptoms (other than exhaustion) - no fever, no

> cough and four different docs could not hear it with a stethescope.

> My lymph nodes were painful at the time also. Was treated with a

> very potent antibiotic (terrible side effects) and started plaquinil

> generic about a month later for " early " stage RA.

>

> So here's my question. What else could this be?? I haven't had any

> swelling or hot joints. My energy level is ten times better than it

> was six months ago and my lymph nodes no longer feel inflammed but

> since starting the RA drug six months ago, the sausage sensation is

> worse as are my feet. I have some burning sensations occasionaly

> but not the horrific pain that so many of you experience.

>

> Anyone else have RA WITHOUT swelling???

>

> Another thought is possible neuropathy... as I had untreated

> gestational diabetes during my last pregnancy (I had a ten pound

> baby that needed glucose and my A1C showed Type2 levels at my 6

> week post partum check up) LONG STORY...

>

> Thank you all for your thoughts and experience.

>

> Amber in , CA

>

[Guest guest]

Hi,

Yes, I have been diagnosed with RA and I do not notice any joint

swelling. What I have learned is that although I may not think that a

joint is swollen, by manipulating it and checking the amount of fluid

in a joint by lifting the skin over a joint and then watching it go

back into place, a rheumy may see swelling that you and I might miss.

The diagnosis of RA comes from a collection of symptoms, not just one

thing. Symmetrical inflammation in joints, fatigue, certain factors in

blood work (Not just RA factor) are all indications of RA. If you do

have RA, you are fortunate that a doc caught it early and is treating

it. I doubted my diagnosis for the first 2 years. I am becoming more

convinced that the docs are right and I am thankful that I have been

treated for the disease these past 2 years. Keep asking questions and

exploring but keep an open mind. The important thing is that you feel

better and that you are treated before you have significant damage.

Take care,

Pat

> >

> > I have an appointment with my Rheumy on Thursday and I am going to

> > talk with her about what else could be going on with me. I started

> > Plaqunil generic about six months ago and my symptoms have only

> > gotten worse. Let me start at the beginning...

> >

> > Ten months ago I went to my family doc because I was having SERIOUS

> > fatigue. Granted I had a 12 month old, a 2 1/2 year old and a 5

> > year old at the time, but I felt that my fatigue was unusual (my

> > kids are good sleepers thankfully). A few tests came back out of

> > whack. Liver enzymes were mildly elevated, Vitamin D levels were

> > low (long time breast feeder no wonder) and Esr was mildly

> > elevated. Cortisol levels and thyroid levels were all

> > within " normal " limits, ANA neg, EBV neg.

> > It's important to note that after my first child was born I started

> > to experience sausage like sensations in my fingers and stiffness in

> > my feet. No swelling ever. These sensations have been with me for

> > over six years now. The family doc then ran the Rheumatoid Factor

> > and that was BARELY postive. So she referred me to a Rheumy and the

> > Rheumy did a chest xray to rule out sarcoidosis. Surprise! I had

> > pneumonia - with no symptoms (other than exhaustion) - no fever, no

> > cough and four different docs could not hear it with a stethescope.

> > My lymph nodes were painful at the time also. Was treated with a

> > very potent antibiotic (terrible side effects) and started plaquinil

> > generic about a month later for " early " stage RA.

> >

> > So here's my question. What else could this be?? I haven't had any

> > swelling or hot joints. My energy level is ten times better than it

> > was six months ago and my lymph nodes no longer feel inflammed but

> > since starting the RA drug six months ago, the sausage sensation is

> > worse as are my feet. I have some burning sensations occasionaly

> > but not the horrific pain that so many of you experience.

> >

> > Anyone else have RA WITHOUT swelling???

> >

> > Another thought is possible neuropathy... as I had untreated

> > gestational diabetes during my last pregnancy (I had a ten pound

> > baby that needed glucose and my A1C showed Type2 levels at my 6

> > week post partum check up) LONG STORY...

> >

> > Thank you all for your thoughts and experience.

> >

> > Amber in , CA

> >

>

[Guest guest]

Early RA symptoms are fatigue, muscle aches, tingling in extremities, elevated

CPR, low grade fevers, morning stiffness, weight loss, etc.  And they pretty

much stay if not being treated or you go in remission.

 

Since it seems unpopular to tell someone they think someone doesn't have RA, let

me explain.  Not everyone with swollen, OCCASIONALLY tingling feet has RA. 

After the pneumonia was controlled, the lady's fatigue left, but is left with

what appears to be swollen feet with some occasional tingling.  The blood work

is indicative of chronic infection (undiagnosed pneumonia and a million other

things, along with RA) which is why I questioned if the blood work was repeated

and asked if anything made it better.  In the past 12 months she has had a

complicated diabetic pregnancy, pneumonia with side effects, and having to take

care of three children under the age of 6, I suppose she would feel horrible.

 

Part of being supportive is also saying, " Hey, you might not have this awful

disease, maybe just some swollen feet! " .  I am not going to sit here, just

because someone joins an RA groups and tell them they must have RA...if I think

it could be something else I am surely going to offer it.  Who wants to have

this?  Gosh, if someone wants it or wants more of it they can have mine...I

don't want any part of this monster.

 

Shandi

From: <engeorgiadou@...>

Subject: [ ] Re: Misdiagnosed? RA with NO swelling or hot joints???

Date: Wednesday, August 20, 2008, 7:50 AM

Dear Shandi,

since you mentioned it, could you inform us which are the early

symptoms of RA ?

Thanks a lot,

>

> From: coops1mom <welshclan@. ..>

> Subject: [ ] Misdiagnosed? RA with NO swelling or hot

joints???

> @gro ups.com

> Date: Tuesday, August 19, 2008, 8:16 PM

>

>

>

>

>

>

> I have an appointment with my Rheumy on Thursday and I am going to

> talk with her about what else could be going on with me. I started

> Plaqunil generic about six months ago and my symptoms have only

gotten

> worse. Let me start at the beginning...

>

> Ten months ago I went to my family doc because I was having SERIOUS

> fatigue. Granted I had a 12 month old, a 2 1/2 year old and a 5 year

> old at the time, but I felt that my fatigue was unusual (my kids are

> good sleepers thankfully). A few tests came back out of whack. Liver

> enzymes were mildly elevated, Vitamin D levels were low (long time

> breast feeder no wonder) and Esr was mildly elevated. Cortisol

levels

> and thyroid levels were all within " normal " limits, ANA neg, EBV

neg.

> It's important to note that after my first child was born I started

> to experience sausage like sensations in my fingers and stiffness in

> my feet. No swelling ever. These sensations have been with me for

> over six years now. The family doc then ran the Rheumatoid Factor

and

> that was BARELY postive. So she referred me to a Rheumy and the

> Rheumy did a chest xray to rule out sarcoidosis. Surprise! I had

> pneumonia - with no symptoms (other than exhaustion) - no fever, no

> cough and four different docs could not hear it with a stethescope.

> My lymph nodes were painful at the time also. Was treated with a

very

> potent antibiotic (terrible side effects) and started plaquinil

> generic about a month later for " early " stage RA.

>

> So here's my question. What else could this be?? I haven't had any

> swelling or hot joints. My energy level is ten times better than it

> was six months ago and my lymph nodes no longer feel inflammed but

> since starting the RA drug six months ago, the sausage sensation is

> worse as are my feet. I have some burning sensations occasionaly but

> not the horrific pain that so many of you experience.

>

> Anyone else have RA WITHOUT swelling???

>

> Another thought is possible neuropathy.. . as I had untreated

> gestational diabetes during my last pregnancy ( I had a ten pound

baby

> that needed glucose and my A1C showed Type2 levels at my 6 week post

> partum check up) LONG STORY...

>

> Thank you all for your thoughts and experience.

>

> Amber in , CA

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

amber

I have been recently diagnosed with ra...I do not have visible swelling

but maybe slighly if any....I get alot of burning and pain in my

joints..My rheumy told me that because i dont see the inflammation I

had enough in my blood work...I too em questioning the diagnoses all

the time...My rheumy just change my meds 3 weeks ago to arava and

plaquanil....I have noticed the fatique is improving and slight

improvment in the pain.....My sedrate was 74 when this all started now

its down to 30...So, IN my mind if it wasnt ra then why is these meds

lowing my sedrate....wishful thinking I guess...But any ways make sure

they look at many possibilitys...hope You feel better soon diane

[Guest guest]

> Anyone else have RA WITHOUT swelling???

Yup. It DOES happen, though it's not the most common way. You will

find as you research this more, everyone is different. To the extent

that it may be possibile that once we understand RA better, we may

tease it apart into several different disease one day. I am one of

three women at work with RA and each of us has completely different

beginnings to our RA, and the other two who have had it longer have

completely different progressions of their disease.

At my last appointmnet, my doc thought my left hand looked a bit

swollen but I didn't see it.....I just knew it hurt and it hasn't

been hurting at all for a while now. I was also running a low temp,

he figured I was having something of a flare and the methotrexate was

controlling it. A week later I already feel fine, but I was having a

lot of fatigue and pains I haven't had since treatment began earlier

this year. But it wasn't an obvious swelling, is what I am saying. He

actually measured around with a tape measure; I am right handed so if

anything that hand should be slightly bigger. It was smaller...just a

few millimeters, but it was. Isn't anymore, so doc was right. Gee,

think I'd know my own hands lol but I guess that's his job. When i

have symptoms, I often FEEL as if I'm swollen but it's such a low

amount that you don't SEE the swelling. Doesn't stop it from hurting

like hell or losing function of the joint, but obviously it can't

compare to the obvious swelling of others. We all have differnt

symptoms and bloodwork but clinical symptoms can still be called RA.

It can be rather mysterious and infuriating, that's for sure.

If you have any doubts of your RA diagnosis, the best bet is to make

sure the tests are done to rule out other possibilities. That's what

they had to do with me. When all was said and done, RA was the only

viable answer left. And treating me for RA improved my existence

100%, so I guess it's RA even if the disease isn't playing out like

classic textbook case says it should. Another thing is, the longer it

goes untreated, often in people who don't have those classic symptoms

for a while or the bloodwork isn't showing up at first, they are the

ones who end up suffering the most because treatments were held off

until there was a clearer picture. You can lose valuable ground in

fighting this thing if you wait. One cjoint damage is there, you

can't do a thing to get that tissue back, and the immune sysytem has

gone wackier behind the scenes. The sooner you start treatments, the

better your chances in the long run. Unfortunately, too many wait

till they pass that point of no return and are then trying to play

catch up to symptoms their whole lives without preventing the disease

progression at all. That's what happened to one gal I work with. Her

symptoms were so mild for a few years, she didn't even seek medical

treatment till there was significant joint damage and she noticed her

hands becoming deformed. She is miserable 24/7 now. I feel very lucky

that my symptoms of a milder RA were actually much worse than hers,

early on. The way I felt demanded attention, and the early aggressive

tretments may help me keep a decent life for years to come. But at

those early stages, neither one of us knew enough to know all that.

It's all in hindsight we can say this.

Prolly more than you wanted to know lol

Hugs,

[Guest guest]

Now you described the situation much better! And believe me you have helped me a

lot without even knowing it!

You see, I had a very rough time during the last 6 months with a bad divorce, 2

family deaths and a small child to take care off. At the top of all these, I

visited my doctor and after he examined me he suggested I make some blood tests

for RA. The RA factor was negative, but the Protein you mention was 5.7 out of

6.0. After that, I have visited 3 doctors and they all have 3 different

opinions:

1. The first one said it's hypothyroidism and I should check out my working

position in front of the PC.

2. Another one said is carpal tunnel syndrome and he laughed at me for the

severe pain I feel at my joints.

3. And the last one said it will definitely develop to RA.

Well, I would definitely hope it's not RA, but although I am on vacation, it's

the 1st day that I fell less pain and I tried to visit the beach and take a

swim.

As you see from the above, if I have visited a psychologist maybe, he would

have mentioned that all of the pain is a result of the stress I experience and

that I should relaxxxxxxxxx!

 

So 4 different doctors , 4 different opinions, can you believe that? In my

early stages of the disease, I am very much afraid and very much complicated.

For that reason, me and people like me seek for every advice, help and support

they can get. I quess by the time you develop the disease, there's no way

back...is it?

 

Best Regards,

 

--- Στις Τετ., 20/08/08, ο/η S. Pruitt <seriouslysanibel@...>

έγÏαψε:

Από: S. Pruitt <seriouslysanibel@...>

Θέμα: Re: [ ] Re: Misdiagnosed? RA with NO swelling or hot

joints???

ΠÏος:

ΗμεÏομηνία: ΤετάÏτη, 20 ΑÏγουστος 2008, 17:24

Early RA symptoms are fatigue, muscle aches, tingling in extremities, elevated

CPR, low grade fevers, morning stiffness, weight loss, etc.  And they pretty

much stay if not being treated or you go in remission.

 

Since it seems unpopular to tell someone they think someone doesn't have RA, let

me explain.  Not everyone with swollen, OCCASIONALLY tingling feet has RA. 

After the pneumonia was controlled, the lady's fatigue left, but is left with

what appears to be swollen feet with some occasional tingling.  The blood work

is indicative of chronic infection (undiagnosed pneumonia and a million other

things, along with RA) which is why I questioned if the blood work was repeated

and asked if anything made it better.  In the past 12 months she has had a

complicated diabetic pregnancy, pneumonia with side effects, and having to take

care of three children under the age of 6, I suppose she would feel horrible.

 

Part of being supportive is also saying, " Hey, you might not have this awful

disease, maybe just some swollen feet! " .  I am not going to sit here, just

because someone joins an RA groups and tell them they must have RA...if I think

it could be something else I am surely going to offer it.  Who wants to have

this?  Gosh, if someone wants it or wants more of it they can have mine...I

don't want any part of this monster.

 

Shandi

From: <engeorgiadou@ .gr>

Subject: [ ] Re: Misdiagnosed? RA with NO swelling or hot joints???

@gro ups.com

Date: Wednesday, August 20, 2008, 7:50 AM

Dear Shandi,

since you mentioned it, could you inform us which are the early

symptoms of RA ?

Thanks a lot,

>

> From: coops1mom <welshclan@. ..>

> Subject: [ ] Misdiagnosed? RA with NO swelling or hot

joints???

> @gro ups.com

> Date: Tuesday, August 19, 2008, 8:16 PM

>

>

>

>

>

>

> I have an appointment with my Rheumy on Thursday and I am going to

> talk with her about what else could be going on with me. I started

> Plaqunil generic about six months ago and my symptoms have only

gotten

> worse. Let me start at the beginning...

>

> Ten months ago I went to my family doc because I was having SERIOUS

> fatigue. Granted I had a 12 month old, a 2 1/2 year old and a 5 year

> old at the time, but I felt that my fatigue was unusual (my kids are

> good sleepers thankfully). A few tests came back out of whack. Liver

> enzymes were mildly elevated, Vitamin D levels were low (long time

> breast feeder no wonder) and Esr was mildly elevated. Cortisol

levels

> and thyroid levels were all within " normal " limits, ANA neg, EBV

neg.

> It's important to note that after my first child was born I started

> to experience sausage like sensations in my fingers and stiffness in

> my feet. No swelling ever. These sensations have been with me for

> over six years now. The family doc then ran the Rheumatoid Factor

and

> that was BARELY postive. So she referred me to a Rheumy and the

> Rheumy did a chest xray to rule out sarcoidosis. Surprise! I had

> pneumonia - with no symptoms (other than exhaustion) - no fever, no

> cough and four different docs could not hear it with a stethescope.

> My lymph nodes were painful at the time also. Was treated with a

very

> potent antibiotic (terrible side effects) and started plaquinil

> generic about a month later for " early " stage RA.

>

> So here's my question. What else could this be?? I haven't had any

> swelling or hot joints. My energy level is ten times better than it

> was six months ago and my lymph nodes no longer feel inflammed but

> since starting the RA drug six months ago, the sausage sensation is

> worse as are my feet. I have some burning sensations occasionaly but

> not the horrific pain that so many of you experience.

>

> Anyone else have RA WITHOUT swelling???

>

> Another thought is possible neuropathy.. . as I had untreated

> gestational diabetes during my last pregnancy ( I had a ten pound

baby

> that needed glucose and my A1C showed Type2 levels at my 6 week post

> partum check up) LONG STORY...

>

> Thank you all for your thoughts and experience.

>

> Amber in , CA

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>