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Re: So confused!

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Amy,

I was diagnosed with PA last year. I had one " sausage finger " pinky on my right

hand which the medications have mostly taken care of but I still can't bend it

all the way. I also had the pitting of the nails and when my rhuemy reviewed

the initial x-rays on my swollen pinky, he said there was some " whittling " of

the bone. I recently had a complete bone scan due to being 47 and my mom having

osteoporosis. The bone scan came back fine with the exception of a very slight

amount of damage in the hip joints. Low enough that they did not feel any

medication was necessary. It appears that you can have PA and no bone damage.

Possibly my PA was caught early enough that it hasn't affected the bones yet and

maybe we can ward off some of the damage with early treatment. I also have

carpal tunnel which I was told is very common to those with arthritis. There

are many on this list that have PA and fibro so is it possible that you do have

both?

I hope your next doctor visit will help you get all the right answers. Take

care and let us know how it goes.

Debbie

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I have PA and have for over 3 years. The swelling moves sometimes from joint to

joint. Other times I have to have a cortisone shot in a finger or joint to stop

the damage. I tried methotrexate for 6 months with no result and now I am on

Humira (for only a month now) , it is working great thus far.

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I went to the rheumy today and am even more confused now! She said

because I had no inflammation on the bone scan (except for a little on

my foot), that she wants me to forget about the diagnosis of PA for

now and if I get worse in the future, maybe I should be rechecked.

This is coming from the same doctor who months ago told me I needed

Humira injections or Remicade to stop the progression of the illness.

Now she thinks maybe it's fibromyalgia after all even though she

seemed sure that it wasn't that, which was my original diagnosis to

begin with! I can't believe this crap! And, to top it all off, she

said I should keep taking Mobic as needed, which as you all know is an

anti-inflammatory, even though there was no signs of inflammation on

the bone scan, because it's apparent that the knuckles of both of my

hands are swollen. She said that was probably due to some type of

tendonitis. I read recently though that you can't get tendonitis in

your hands, only your wrists, but she doesn't think I have carpal

tunnel. Ugghhh! I think that's the last time I see her. I feel like

I'm back to square one. Still feeling like crap with very little

relief after tons of tests and medical visits. If I didn't feel so

bad, I wouldn't go to another doctor again forever! Woe is me!

Amy

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Amy, It sounds to me like you need another opinion.

aimrich28 <aimrich@...> wrote:I went to the rheumy today and am even

more confused now! She said

because I had no inflammation on the bone scan (except for a little on

my foot), that she wants me to forget about the diagnosis of PA for

now and if I get worse in the future, maybe I should be rechecked.

This is coming from the same doctor who months ago told me I needed

Humira injections or Remicade to stop the progression of the illness.

Now she thinks maybe it's fibromyalgia after all even though she

seemed sure that it wasn't that, which was my original diagnosis to

begin with! I can't believe this crap! And, to top it all off, she

said I should keep taking Mobic as needed, which as you all know is an

anti-inflammatory, even though there was no signs of inflammation on

the bone scan, because it's apparent that the knuckles of both of my

hands are swollen. She said that was probably due to some type of

tendonitis. I read recently though that you can't get tendonitis in

your hands, only your wrists, but she doesn't think I have carpal

tunnel. Ugghhh! I think that's the last time I see her. I feel like

I'm back to square one. Still feeling like crap with very little

relief after tons of tests and medical visits. If I didn't feel so

bad, I wouldn't go to another doctor again forever! Woe is me!

Amy

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In a message dated 6/22/05 11:45:16 PM GMT Daylight Time,

aimrich@... writes:

My questions are has anyone else been diagnosed with PA but had no

sign of it on testing, such as on x-rays or a bone scan? And does

anyone know if swelling and redness in the hands around the knuckles

can be caused by FM or carpal tunnel? And with PA, does such

swelling tend to come and go often?

Hi Amy,

My fingers would swell and go very red while I was going through a PA flare.

Looking back on this, what was actually happening was that the joints of

those fingers were being attacked. At the end of it I had two fingers with

pencil/cup syndrome and they are both now a half inch shorter than they should

be.

So I think some of the others will tell you that your description could be

Fibro but I wouldn't rule out the PA either.

I hope they can come to some decision for you soon so that they can get you

going on the correct treatment. No wonder your confused Amy, when the

specialists can't seem to agree on what is wrong.

Take care,

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> yes , my swelling comes and goes frequently. it is like it

travels around my body. it is different from day to dy. new spots

will pop up out of nowhere and then other feel better. this is in

my toes, feet anklyes, hands etc...

keri

> In a message dated 6/22/05 11:45:16 PM GMT Daylight Time,

> aimrich@o... writes:

>

> My questions are has anyone else been diagnosed with PA but had

no

> sign of it on testing, such as on x-rays or a bone scan? And

does

> anyone know if swelling and redness in the hands around the

knuckles

> can be caused by FM or carpal tunnel? And with PA, does such

> swelling tend to come and go often?

>

>

>

>

> Hi Amy,

>

> My fingers would swell and go very red while I was going through a

PA flare.

> Looking back on this, what was actually happening was that the

joints of

> those fingers were being attacked. At the end of it I had two

fingers with

> pencil/cup syndrome and they are both now a half inch shorter than

they should be.

> So I think some of the others will tell you that your description

could be

> Fibro but I wouldn't rule out the PA either.

> I hope they can come to some decision for you soon so that they

can get you

> going on the correct treatment. No wonder your confused Amy, when

the

> specialists can't seem to agree on what is wrong.

>

> Take care,

>

>

>

>

>

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Hi,

I had no signs of PA on my x-rays or bone scan, so my rheumy had them

do a full body SPECT scan on me and that's when it showed up all up and

down my spine. I get general water retention with my FM, but when it's

a PA flare, it seems to be only in specific joints, like my SI joints,

fingers, toes, etc. Hope this helps.

Jayson

> > In a message dated 6/22/05 11:45:16 PM GMT Daylight Time, 

> > aimrich@o... writes:

> >

> > My  questions are has anyone else been diagnosed with PA but had

> no

> > sign of it  on testing, such as on x-rays or a bone scan?  And

> does

> > anyone know  if swelling and redness in the hands around the

> knuckles

> > can be caused by  FM or carpal tunnel?  And with PA, does such

> > swelling tend to come  and go often?

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