Re: My 2nd rheumy appoint. Now I'm really confused

[Guest guest]

I would get a second opinion from another rhematologist. My

understanding is that not everyone who has PA has saugage fingers (I

don't).

> I just got back from my second appoitment with my rheumatologist.

> The first visit he said that I have PA, now today he said he does

not

> think I have PA because my fingers were not swollen like sausages.

> He thinks I might have Fibromyalgia. This is so confusing to me

now

> because I have pain in my fingers, toes, knees, feet, neck, and

> shoulders. There are days that I can barely walk. I have also had

P

> for 26 years and I have terrible pitted nails in my fingers and

> toes. He said that he got the results of the x-rays from my spine

> and that he did see some spurs or notches, I can't remember which,

> and that they were on my T1 and T2 and L4 and L5. So he gave me

> another refill on my NSAID and Prilosac and gave me a prescription

> for more blood work and gave me a little pamphlet on Fibromyalgia

and

> told me to come back in 4 months. I am so upset right now, not for

> the fact that it would be great if I didn't have PA, but I really

> don't have any symptoms of the Fibro. I feel like just giving up

> with the doctors and just live my life in pain and hope for the

> best. Sorry about the rambling, but I figured that I needed the

> support of this wonder group of ours. Beth Ann

[Guest guest]

Hello,

PA is a complex disease. It may take quite a bit of time (sometimes

up to a year) to get an accurate diagnosis. But sausage digits may or

may not be present at the time of diagnosis. If you've had them in

the past and they went away, that would help determine the disease.

Main diagnosis goes something like this:

1. Do you have psoriasis, history of psoriasis? Answer usually is

yes, but not always.

2. Where are your aches/pains? Generally first symptoms are in the

hands/fingers, feet/toes, SI joint, neck.

3. Do you have sausage digits? This would help make a definitive

diagnosis, but lack thereof does not rule out PA.

4. Do you have pitting in your nails? This is a helpful indicator but

certainly not true for all cases.

5. Run a lot of blood tests to rule everything else out- ie RA, Gout,

Lyme disease, Reactive Arthritis, a heck of a lot of other diseases.

Lab work profile for PA has not really been established

unfortunately. Generally, it's rh negative, pos ANA with possible

high titer, possible high SED rate (though not usually), positive C-

Reactive Protein and high titer. Beware of doctors who rely on teh

SED rate. It's useful for RA, but may be misleading for PA. There

could be other diseases involved too; it's possible to have PA and

XXX (name the disease).

If a doctor tries to write off your symptoms with Fibromyalgia, first

try getting his reasons and his understanding of PA. Make sure and

indicate to him that PA is a complex disease and does he understand

that is may take some time for him to observe the disease properly.

Your history to me would indicate PA. In the meantime, start looking

for ANOTHER rheumy.

Hope this info is helpful to you...

Best wishes,

-Meghan

> > I just got back from my second appoitment with my

rheumatologist.

> > The first visit he said that I have PA, now today he said he does

> not

> > think I have PA because my fingers were not swollen like

sausages.

> > He thinks I might have Fibromyalgia. This is so confusing to me

> now

> > because I have pain in my fingers, toes, knees, feet, neck, and

> > shoulders. There are days that I can barely walk. I have also

had

> P

> > for 26 years and I have terrible pitted nails in my fingers and

> > toes. He said that he got the results of the x-rays from my

spine

> > and that he did see some spurs or notches, I can't remember

which,

> > and that they were on my T1 and T2 and L4 and L5. So he gave me

> > another refill on my NSAID and Prilosac and gave me a

prescription

> > for more blood work and gave me a little pamphlet on Fibromyalgia

> and

> > told me to come back in 4 months. I am so upset right now, not

for

> > the fact that it would be great if I didn't have PA, but I really

> > don't have any symptoms of the Fibro. I feel like just giving up

> > with the doctors and just live my life in pain and hope for the

> > best. Sorry about the rambling, but I figured that I needed the

> > support of this wonder group of ours. Beth Ann

[Guest guest]

-i had p for about 10 years. then the pain began in 92. could not get

out of bed. had to crawl to the bath room. and pray for hot water.

it made me feel better. my fingers were swollen at the time but i did

not know it because i was a little heavy. --my fingers and toes do

swell, but last month they did not. now it all just comes and goes. i could not

open a bottle or lift a pictcher i have spurs in my spine. hips are kacked up

but i am doing yoga and will beat this.

kyle

[

[Guest guest]

Find another Rheumy!

I didn't have swollen digits for the first year of

being DX with PA. Having the P is sometimes enough,

but not always, to make the DX of PA.

Good luck,

in Atlanta, GA

--- beth0921 <bstark@...> wrote:

> I just got back from my second appoitment with my

> rheumatologist.

> The first visit he said that I have PA, now today he

> said he does not

> think I have PA because my fingers were not swollen

> like sausages.

> He thinks I might have Fibromyalgia. This is so

> confusing to me now

> because I have pain in my fingers, toes, knees,

> feet, neck, and

> shoulders. There are days that I can barely walk.

> I have also had P

> for 26 years and I have terrible pitted nails in my

> fingers and

> toes. He said that he got the results of the x-rays

> from my spine

> and that he did see some spurs or notches, I can't

> remember which,

> and that they were on my T1 and T2 and L4 and L5.

> So he gave me

> another refill on my NSAID and Prilosac and gave me

> a prescription

> for more blood work and gave me a little pamphlet on

> Fibromyalgia and

> told me to come back in 4 months. I am so upset

> right now, not for

> the fact that it would be great if I didn't have PA,

> but I really

> don't have any symptoms of the Fibro. I feel like

> just giving up

> with the doctors and just live my life in pain and

> hope for the

> best. Sorry about the rambling, but I figured that

> I needed the

> support of this wonder group of ours. Beth Ann

>

>

>

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