Re: Can't get a diagnosis

[Guest guest]

Deb: have you had high sed rates and or c reactive protein levels? Those are

the primary indicators of inflammation and if yours are normal or below, it

might be something else - even another kind of arthritis but one that is not so

" inflammatory " . If she doesn't routinely do these two tests, though, you need

to find someone who does. I did not have " joint " swelling when I was diagnosed

but my entire legs from above the knee all the way down to my toes were terribly

swollen.

I think fibro is a " catch-all " that doctors often use when they don't know what

else to offer as a diagnosis, though it can be extremely painful and

debilitating, according to my internist who treats a number of people with it.

Joanna Hoelscher

[Guest guest]

Hi Deb,

Has your rheumy sent you for a bone scan or to a lab for a full blood

workup, they can test your blood for RA. It sounds like you need a new rheumy,

if this one wont listen to you and take the time to see what is going on you

really should look for a replacement. There are a lot of other rheumys out there

don't let yourself be stuck with a doctor that wont listen to what you have to

say, you know your body better than any doctor does.

Lori in AZ

[Guest guest]

Have they checked your SED rate? That would be the biggest indicator that I'm

aware of other than symptoms.

[Guest guest]

Hi Deb: Sorry that you are going through this, I think I can say that most of

us have traveled this path. PsA is a difficult diagnosis, but your doctor

should not just be dismissing you based on the fact that you don't have joint

swelling. In my opinion you should seek a 2nd opinion with a different Rheumy

and preferably one who works with PsA patients. Call around and ask other

doctor's offices if they treat any PsA patients, or check with your Primary Care

doctor for a referral. If you are near a University with a Medical School check

with them. You must be proactive in your care. Also, I would like to recommend

that you read a book by Dr. Dafna Gladman of the University of Toronto's PsA

clinic it's available on Amazon and is entitled Psoriatic Arthritis " The Facts " .

This book really explains this disease fully and in layman's language. Also,

check the National Psoriasis Foundations Website www.pso.org for great

information. Good Luck to you.

Deanna

[Guest guest]

Hi, Deb,

I had the same experience. I was seeing a rheumy who specialized in Fibro. He

had dx'd and was treating me for Fibro. My pain management doc suggested I ask

my rheumy about PA because he saw very small pitting in my nails. My next

appointment I mentioned PA to my Rheumy. He said, " I'd know if you had PA, but

you don't. "

Well, shortly after that my Rheumy stopped seeing patients to research Fibro

full time. I switched rheumys. In my first exam I explained my symptoms and

mentioned the nail pitting. The rheumy ordered x-rays of my hands and feet and

it showed a toe with the 'pencil in cup' bone damage - an indication of PA.

So, as so many on this list have said, see another doctor until you can find one

who will listen to you. My visible symptoms were very minor, but the x-ray was

undeniable.

I've been on Humira for 18 months now and have my life back. Although, I'm never

totally without pain, I can do so much more than before the treatment.

Good luck to you. Hugs,

Dee

[Guest guest]

Deb,

Of course, no one on this forum can tell you definitively if you do or

don't have PA. However, your symptoms mirrored mine for a number of

years prior to me experiencing finger and toe joint swelling, that seems

to be the defining symptom that most Rhuemys use to diagnose the

disease.

Do you have psoriasis? If you don't have psoriasis you probably don't

have PA. Pitting of the nails is a common symptom of psoriasis but is

hardly definitive. Do you have any other skin problems, like dry, scaly

patches on your scalp, elbows, or even between your butt cheeks? If you

do you may well have psoriasis. If you have psoriasis and you are

experiencing joint pain (especially in the hands, feet, hips, and back),

you may have PA too.

If your current Rheumy is dismissive of PA, be sure he/she explains

exactly why they don't believe you have PA (no psoriasis, no swelling,

no elevated sed rate, etc...). Then ask them exactly how they would

diagnose PA. If your Rheumy is simply being dismissive (highly

unlikely), you should probably get a second opinion from a Rheumy that

has treated one or more patients with PA (this is very important, as

many Rheumy's have never actually treated patients with PA).

Chip

[Guest guest]

hi, one thing about the sed rate and c react. my rheumy told me that it comes

from being overweight too and doesn't really tell you if you have psa. i was

like what? then he told me i had fibro too. i just wish they would make up their

minds and stick with one diagnois. good luck. it is hard to find a good doctor

anywhere.  

[Guest guest]

Just because you don't have psoriasis does not mean you don't have PsA. About

10 % never show any signs of psoriasis at all. I was just like that until about

6 months ago when it developed on my scalp.

Celeste

[Guest guest]

Thanks everyone. My sed rate and crp has been high in the past but in the last

few blood tests its been normal. My RA factor is negative too. Maybe i really

don't have psa...maybe it is something else or some other type of arthritis. Its

so frustrating when you know you've got pain but all the tests come back as

normal. Oh well.

Thank you again everyone for your kind words and help.

Cheers,

deb

[Guest guest]

Hi All,

Just a little FYI...you can have PsA without having skin involvement. I know

because I am an example.

[Guest guest]

On the other hand, if you've had some fairly consistently high sed rates and

CRPs, those are the two tests used to indicate inflammatory disease. I'm really

surprised that your rheumatologist didn't diagnose you then with PSA because it

would certainly seem that you have all the symptoms. Maybe you should consider

getting a second opinion.

Joanna Hoelscher

[Guest guest]

It's very possible... I was diagnosed with PsA before I developed any skin

issues. Just wait I am sure yours are coming. Gratefully, mine isn't bad enough

to need Rx meds. I have noticed, however, whenever I have a breakout and it

clears up... my skin is pure white. I have spots all over me. Does anyone else

have this?

Good luck all and feel better!

[Guest guest]

The thing is, i do have psoriasis. I have it on my scalp, behind my ears, my

eyelid and nether regions...and if 'good' skin gets damaged in any way...ie

sunburn, i get a bad psoriasis outbreak there which can takes months to heal.

That combined with my joint pain, fatigue etc.. made me think of PA, but as i

said, my rheumy doesn't think so. She just keeps saying fibromyalgia. Maybe it

is, i have no idea anymore...

deb

[Guest guest]

I get sick of hearing about fibromyalgia.  That is the explanation for

everything! When they don't know or haven't heard of something, they blame it

on fibromyalgia. Some of the stuff they blame on fibromyalgia are things that

are listed as symptoms of PA on the Mayo Clinic website. It really gets

frustrating....I sympathize with you! Hang in there! You may need to try a

different rheumatologist.

[Guest guest]

Hi, my name is Karol. I have been trying to get a FIRM diagnosis for years.

I've gone to 6 rhuematologists. Two say PA and wanted to put me on DMARDs, and

4 say fibromyalgia. I have psoriasis on one elbow, and it seems to be in my

toenails too. It just showed up out of the blue a few years ago. My sed rate

and CRP have been consistently high. I have osteo arthritis all over my body.

The " new " rheumy I have says that I have self-induced fibromyalgia and wants me

to get all the chemicals out of my body and eat only natural things, cut out

caffeine from coffee (I drink alot!), and stop smoking. This will supposedly

cure me. I'm sure I will probably feel better, so I'm trying it, however

slowly. It's hard to change your lifestyle within 30 days till next

appointment! So, the question is: WHO DO I TRUST?

[Guest guest]

How strange, i get white spots too when i get an outbreak of psoriasis where

i've not previously got it. I got a bad sunburn on my shins and got really bad

psoriasis on my legs, after it cleared up (like six months later) my legs were

covered with white spots...and now over six months later they're still covered

in white patches.

deb

[Guest guest]

Karol: Check it out - there's lots of info on the web: fibromyalgia is NOT an

inflammatory disease. If your sed rate and CRP have been consistently high, I

would write off the 4 docs who say that it's just fibro because blood tests are

usually normal with this condition. If you want to keep on with the program the

" new " rheumy has laid out for you, go for it but it if doesn't work within a

reasonable length of time (and I'm skeptical), I would go back to one of the two

who wanted to put you on DMARDs - whichever one you liked the best. (FYI: I

did a quick search and only found one reference to fibro being " self-induced "

and the author pretty much discounted the theory, saying that those who believe

this do so simply because so far science has not been able to definitively

determine its cause.) It will make you healthier, I'm sure; but I don't think

it will help your pain or your psoriasis that much.

It is possible to have both fibro and PsA but the treatments are totally

different, as are the conditions. If you have PsA, it is likely that you will

feel much better within a matter of month or two after going on DMARDs and,

frankly, with your symptoms, I'd think it would be a " no-brainer " .

Joanna Hoelscher

[Guest guest]

HI

About it being self induced, personal habits that are negative do not

help. Maybe they should of given you a hand out that explains that it

quickens the damage.

I have a dear friend that smokes and has fibro. I know that its a tough

thing to quit just like anyone addicted to anything. You should get your

oxygen levels check and go for a sleep study. Depending on your ability

to pay of course. And... unfortunately that is always going to be a

problem. Its to bad because those that need it most do not receive.

[Guest guest]

>

> Karol: Check it out - there's lots of info on the web: fibromyalgia is NOT

an

> inflammatory disease. If your sed rate and CRP have been consistently high, I

> would write off the 4 docs who say that it's just fibro because blood tests

are

> usually normal with this condition. If you want to keep on with the program

the

> " new " rheumy has laid out for you, go for it but it if doesn't work within a

> reasonable length of time (and I'm skeptical), I would go back to one of the

two

> who wanted to put you on DMARDs - whichever one you liked the best. (FYI: I

> did a quick search and only found one reference to fibro being " self-induced "

> and the author pretty much discounted the theory, saying that those who

believe

> this do so simply because so far science has not been able to definitively

> determine its cause.) It will make you healthier, I'm sure; but I don't think

> it will help your pain or your psoriasis that much.

>

>

> It is possible to have both fibro and PsA but the treatments are totally

> different, as are the conditions. If you have PsA, it is likely that you

will

> feel much better within a matter of month or two after going on DMARDs and,

> frankly, with your symptoms, I'd think it would be a " no-brainer " .

>

>

> Joanna Hoelscher

>

Hi Joanna, thanks for your response. It is absolutely crazy what we must go

through to get a proper diagnosis. I did make a mistake in that post. It was

DMARDS that the 4 other rhuemys wanted to put me on, it was Biologics. With

some of them saying this, and some of them saying that, it's kind of scary to go

ahead and make the decision to get on those very dangerous drugs. I think I'm

going to make an appointment with a rhuemy out of the U of M Hospital and see if

I can't put an answer to this once and for all! What I don't understand is how

a doctor can tell if I don't have PA when they haven't done any X-rays on my

bones? I have an appointment with the latest rhuemy tomorrow (the one that says

I have self induced FM) and I'm going to ask her about it. Hope you are well.

I'll post again if I find out any significant information.

[Guest guest]

Don't know if this will help or not but....one way they diagnosed me with PA is

they checked my finger joints. I didn't recognize any problems there but they

could. The distal joints, the ones closest to the finger nails, if they are

affected in way it is PA. If the joint at the base of finger/knuckle is

involved then is is probably RA.

-Eileen

[Guest guest]

Hi,

It's been a while since i've been on here, but decided to read some posts. I've

was diagnosed with polymyalgia rheumatic (PMR) and/or

PsA over 2 years ago. Two different rheumatologists said I have symptoms of

both, but are leaning toward PMR becasue I responded so quickly to prednisone. I

have just two small areas of psoriasis, and don't have the typical " sausage "

fingers and toes. But I do have join, muscle pain, etc. along with high CRP and

Sed rate. I've been trying to wean off the pred for the last year. It's a slow

process and I've had to go back up again, but I'm down to 6 mg. and feeling

pretty good.

I didn't read all your posts, but maybe you could ask you dr. about PMR.

Good luck.

[Guest guest]

Hi . My regular doctor (not my rheumy) diagnosed me a two years ago with

Polymyalgia Rheumatica and put me on prednisone. I was on 40mg and felt great,

started tapering down and felt horrible again. So he put me back up to 40mg and

tried again and it still didn't work. It took me 9 months to get off the

steroids. So, I think I was misdiagnosed with it. Karol