Re: questions about ra and lupus - new member JODI

[Guest guest]

>

> 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

>

Sorry Jodi that no one got back to you but this is such a busy

group I am sure you were just over looked.. again I am sorry. \

and for you question. My dr. had a hard time beliving that I had RA.

he told me it was Fribo.. and reg Arthritis when I got him to run

the RA factor test he was still saying that it was not it boy he ate

his words. lol. he just keep saying I was too young. (45) at the time

and My hands show no sign of RA.. well everyone is differant my mom

and grandmother's hands show no sign either.. any way yes my hand

and feet do swell most of the time that had just started about 6

months ago and hand were falling asleep so bad it would wake me up

and the pain was unreal . they said it was carpal tunnel and I wore

the hand braces for about 2 wks all day and night and now I do not

have the pain that I had but they still fall asleep. I also have IC

( Interstitial Cystitis) which I had long before the RA. I was told

that IC. comes with the RA. Hope that helps alittle and you get some

answers from your dr.

Janet IN IL

[Guest guest]

Thank you for your response, Janet. Yes, this is a busy group. I just

realized that someone had responded to me before, and I missed the e-

mail.

So are the hands and feet falling asleep related to arthritis?

My doctor is not sure what type of arthritis I have. I am taking

Mobic, but no other meds for arthritis. It seems as though all of the

medications I read about have serious side effects.

Jodi

> >

> > 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

> >

> Sorry Jodi that no one got back to you but this is such a busy

> group I am sure you were just over looked.. again I am sorry. \

> and for you question. My dr. had a hard time beliving that I had

RA.

> he told me it was Fribo.. and reg Arthritis when I got him to run

> the RA factor test he was still saying that it was not it boy he

ate

> his words. lol. he just keep saying I was too young. (45) at the

time

> and My hands show no sign of RA.. well everyone is differant my mom

> and grandmother's hands show no sign either.. any way yes my hand

> and feet do swell most of the time that had just started about 6

> months ago and hand were falling asleep so bad it would wake me up

> and the pain was unreal . they said it was carpal tunnel and I wore

> the hand braces for about 2 wks all day and night and now I do not

> have the pain that I had but they still fall asleep. I also have IC

> ( Interstitial Cystitis) which I had long before the RA. I was told

> that IC. comes with the RA. Hope that helps alittle and you get

some

> answers from your dr.

> Janet IN IL

>

[Guest guest]

Hi Jodi

I had the same symptoms, I was diagnosed with Sero Negative RA.

Best wishes

Jill

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[Guest guest]

>

> > So are the hands and feet falling asleep related to arthritis?

>

> My doctor is not sure what type of arthritis I have. I am taking

> Mobic, but no other meds for arthritis. It seems as though all of

the

> medications I read about have serious side effects.

>

> Jodi

>

> --- Jodi, I dont know if it or not they said I had Carpal Tunnel and

had me were the glove and they are better they also wanted me to have

surgery on them and I would not do it. I am just to hard to start a IV

on and it is just to painful so I said I would try the gloves frist

and they are much better

take care Janet IN IL

[Guest guest]

Hi Jodi:

I am sorry that your last post was somehow unanswered.

We are a large group, and busy, so sometimes posts

can get lost in the mix, and maybe that is what

happened to yours, and can also act up at times.

Anyway, yes, you can have RA and have a negative RF

factor, and this is called seronegative RA. Your

symptoms sound a lot like RA, but also have a lupus

like component in rashes. It sometimes takes quite a

while to come to a diagnosis, because these autoimmune

diseases sometimes mimic each other, have the same

sort of symtoms, and you can have more than one

disorder at a time.

I have RA, OA and Fibromyalgia. I developed fibro two

to three years after my RA was dx by my doctor. I had

a positive RF factor, and family history of RA, and by

my symptoms and presentation during a severe flare of

my hands, my doctor diagnosed me with RA, and began

treating me right away for RA. However, she had told

me once that even if my RF factor had not been

positive, the rest of my symptoms pointed towards RA,

so she would have begun treating the symptoms of RA,

and not only rely on the blood work.

Sometimes doctors are reluctant to name a diagnosis if

they are not absolutely certain of what is wrong. Is

your doctor treating you with any medications?

Sometimes with the type of medications they are using,

you can see what they are trying to rule out. The

doctor will try a certain medication, and if you

respond to it, that can give them further evidence

for a diagnosis.

Diagnosis of autoimmune disease is difficult,

sometimes takes a very long time, and there are is no

blood or lab work for some, such as fibro. It is very

frustrating for those of us who are in pain, but the

doctor wants to be certain before he diagnoses and

begins treatment, that he is doing the right thing.

Best of luck, and let us know what your doctor decides

-

Kathe in CA

--- Jodi <kathousefl@...> wrote:

> 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

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

> >

> > 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

> >

> Sorry Jodi that no one got back to you but this is such a busy

> group I am sure you were just over looked.. again I am sorry. \

> and for you question. My dr. had a hard time beliving that I had

RA.

> he told me it was Fribo.. and reg Arthritis when I got him to run

> the RA factor test he was still saying that it was not it boy he

ate

> his words. lol. he just keep saying I was too young. (45) at the

time

> and My hands show no sign of RA.. well everyone is differant my mom

> and grandmother's hands show no sign either.. any way yes my hand

> and feet do swell most of the time that had just started about 6

> months ago and hand were falling asleep so bad it would wake me up

> and the pain was unreal . they said it was carpal tunnel and I wore

> the hand braces for about 2 wks all day and night and now I do not

> have the pain that I had but they still fall asleep. I also have IC

> ( Interstitial Cystitis) which I had long before the RA. I was told

> that IC. comes with the RA. Hope that helps alittle and you get

some

> answers from your dr.

> Janet IN IL

>

Janet,

I was diagnosed two years ago with RA/Fibro/Degenerative Disc

Disease/OA/and Peripheral neuropathy. I have had some hand/wrist

swelling all along and occasionally foot swelling. But for the past

week and a half I have had an enormous amount of foot and ankle pain

and swelling that Lasix and keeping my feet up will not help.I wase

up with the foot edema. I also have an RA nodule on the arch of my

foot and I think a new one on my hand just below my ring finger on

the palm side. All my nonRA friends say the foot swelling is from

something else....that has me worried because I don't need anything

else!! I am barely coping with what I already have! I have a Rumey

appt...but not till later this month..he is so busy I can't get in

any earlier. Is your foot swelling like a litle edema...or do you

have REALLY FAT feet,ankles and piggies?? I am hoping that since the

nodule is swelling again too and that there is another one in a

different place, that this is another flare...only more severe than

usual. What do you think?? I know you're not a MD...but you probably

have more experience with this than one!! thanks, jenna

[Guest guest]

Hi Jill,

How long did it take for an official diagnosis?

Jodi

>

> Hi Jodi

> I had the same symptoms, I was diagnosed with Sero Negative RA.

> Best wishes

> Jill

>

>

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> message search.

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>

[Guest guest]

I do not blame you for refusing the surgery, Jan.

I had an orthopedist who wanted to surgery on my neck, and I also

turned it down.

Jodi

> >

> > > So are the hands and feet falling asleep related to

arthritis?

> >

> > My doctor is not sure what type of arthritis I have. I am taking

> > Mobic, but no other meds for arthritis. It seems as though all

of

> the

> > medications I read about have serious side effects.

> >

> > Jodi

> >

> > --- Jodi, I dont know if it or not they said I had Carpal Tunnel

and

> had me were the glove and they are better they also wanted me to

have

> surgery on them and I would not do it. I am just to hard to start

a IV

> on and it is just to painful so I said I would try the gloves

frist

> and they are much better

> take care Janet IN IL

>

[Guest guest]

Hi Jodi

It was about two months after the symptoms first started. I think they came

up with the diagnosis because one of the joints on my right hand had popped

and I couldn't walk or move my arms.

I was on Methotrexate injections for years. This past Christmas I decided I

wouldn't take it any more! It was making me feel too sick.

I decided to try antibiotic therapy. I was on the antibiotics from January

to June, but they were making my skin so dry, I quit taking that too.

Now I'm only taking 25 mg of Indomethacin twice a day. I feel so good! I can

t believe it! I don't know how long this will last, but I'm enjoying every

minute while I can.

Best wishes

Jill

Hi Jill,

How long did it take for an official diagnosis?

Jodi

>

> Hi Jodi

> I had the same symptoms, I was diagnosed with Sero Negative RA.

> Best wishes

> Jill

>

>

> New Message Search

> Find the message you want faster. Visit your group to try out the

improved

> message search.

> Share feedback on the new changes to Groups

> Recent Activity

> 26New Members

> Visit Your Group

>

[Guest guest]

Thank you, Kathe. The only medication I take is Mobic. At my last

appointment, my doctor told me to research plaquenil. It seems it

has a lot of side effects.

Jodi

>

> > 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

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi Jodie:

Don't be afraid of the medications as much as be

afraid of what will happen if you don't take the

medications to try and slow down the progression of

the autoimmune disease itself. I was started on

Plaquenil when I was first dx 7 years ago, and it was

a good first choice for me. I was able to take it for

2-1/2 years, along with Motrin, and some Prednisone

during bad flares, and had no problems at all with any

side effects. The only thing that I know you have to

watch out for is the very rare sidee effect of retinal

damage. My retinas are fine. The damage in my eyes

(cataracts) my eye doctor feels is from prednisone and

methotrexate useage, not the plaquenil.

I would definately give the Plaquenil a chance. All

medications we take sound scary, and have scary side

effects, but the drug companies have to tell you every

little thing that might happen so they can cover their

butts. To me, the more scary thing, is having

autoimmune disease which is not under control, and

having to suffer from the damage it will cause to your

joints, and even your eyes, lungs, heart, and other

internal organs. That, to me, is worse than whatever

the drug can do to me, and that is why I take the

medications I do. So that I will have the quality of

life I want, well, at least most of the time. It's a

patient's choice, along with their doctor, as to what

treatment they will try, but definately give thought

to the Plaquenil or other meds he offers that will

slow down the disease progression. You may not be

able to see it, but under your skin, in your joints,

there could be detruction happening, and once a jont

is damaged, it will always be damaged.

I don't mean to scare you, the meds do that enough

lol, but you have to start fighting the disease from

day one of diagnosis, and early aggressive treatment

has been found to be the best way to do this.

Everyone's case is different, the disease process

itself is different, we can't tell you what will

happen in your case, or how things will be in the

future, all I know is that the way I have been able to

continue doing pretty much what I want to do, is to

take medications, and try and control my RA and fibro,

and not let them control me.

Sorry this is so long, I begin to ramble sometimes,

but the message is this, RA, lupus, and any other

autoimmune disease needs to be fought aggressively.

Best of luck to you, let us know what you decide to

do, okay? Take care -

Kathe in CA

--- Jodi <kathousefl@...> wrote:

> Thank you, Kathe. The only medication I take is

> Mobic. At my last

> appointment, my doctor told me to research

> plaquenil. It seems it

> has a lot of side effects.

>

> Jodi

>>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi Kathe,

I appreciate the advice. I will talk to my doctor about this. I

guess the confusing part is he has not officially diagnosed me with

RA. I am afraid of what the future holds though if this is just the

beginning of the disease.

Thank you again for the information.

Jodi

>

> > Thank you, Kathe. The only medication I take is

> > Mobic. At my last

> > appointment, my doctor told me to research

> > plaquenil. It seems it

> > has a lot of side effects.

> >

> > Jodi

> >>

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>