undiagnosed

[Guest guest]

ellei, I was told the same thing about it being :only a skin condition " and

suffered for years . MY hands which showed very little swelling are badly

damaged and unfixable . MAKE the doctor do xrays . I know what you are going

through . I am an r. n. and no one listened to me either . I am furious . Dont

let

this happen to you . I suffered for years . and NO xrays . I just had both

hips replaced and had my right one done again . I had untreated hip displasia

and

no one did xrays . i went to a rhematologist every 8 weeks for 9 years .

SPEAK UP . dont end up like me .Now I have an enlarged liver from all the

methotrexate and antiinflamatories [and ws never given pain meds ] I dont drink

or

have high cholesterol so theliver problem is not from that..

cathy form ma

[Guest guest]

unogirl45 wrote:

> Hi there!

> It's nice to feel part of a group who understand. I feel really

> stupid at the mo, I have just made the connection between the

> psoriasis that I have had from 6 yrs old and the pain in my sacroiliac

> joints which started after I had my first child. My GP tells me that

> it isn't psoriatic arthritis because I have no swelling of

> fingers/toes. I have been suffering with this pain for 20 years and

> in the last five it has been really quite debilitating but my doctors

> seem to think I'm making it up.

> Now I am suffering with high blood pressure (I see from your comments

> that this is also common and may be due in part to the pain) but have

> also read that there is a heart condition associated with psoriasis.

> I would like to find out a bit more so that I can rule out all the

> bits that don't apply to me. Any suggestions please?

> It's funny, I always worked on the assumption that it was only a skin

> complaint and that at least it couldn't get any worse but now I find

> there are all sorts of nasties associated with it..... and I thought I

> was just getting old. Any thoughts/feedback much appreciated.

> Thanks Ellie

>

>

Ellie

Get to a rhuematologist. Your GP is looking for " classic " symptoms to

diagnose. This disease is different in everybody. The swelling in my

fingers and toes didn't show up until I was almost 30 years into the

proggresion of the disease. If any doctor hints that you are making it

up or are malingering, get a different doctor or, if you can't, confront

them and don't back down. While your doctor is thinking you are making

it up, he is denying you treatment that can be devastating down the road.

Take control of your treatment. Don't let doctors tell you what you know

not to be true.

Good luck

duane

[Editor's Note: Ellie, Duane is right. Your GP probably hasn't seen enough

cases of PA to diagnose it properly. Swelling is not always present, nor does

PA always present itself in fingers and toes. You would not let a GP be the

last word on diagnosing you for cancer and you should similarly not let your GP

diagnose diseases that require years of specialized training. Please get to a

board certified rheumatologist asap. Kathy F.]

[Guest guest]

Dear Ellie,

If you are not seeing a Rhuematologist you need to. Sometime GPs

do not pick up on the signs of PA. They may be very good doctors

for general things but PA needs to be cared for by a specialist.

Even if you need to ask for a consult. Go and talk to a Rhuemy and

they will get you diagnosed and be able to point you in the right

direction to get your pain under control.

It wasn't until my Dermatologist asked my Rhuematologist for a

consult that we found out that I had PA. My Family Practioner never

even considered sending me to a Rhuemy. He thought I just had loose

joints from just having a baby and that the pain would get better on

it's own. It is really discouraging when you are in so much pain

and your doctor takes xrays and says there is nothing wrong. (That

is what happen to me.)

Do you have any pitting in your finger nails or toe nails? If you

do that is a pretty definitive sign of PA.

I wish you the best in this journey of finding the proper care.

smiles,

Ann

>

> Hi there!

> It's nice to feel part of a group who understand. I feel really

> stupid at the mo, I have just made the connection between the

> psoriasis that I have had from 6 yrs old and the pain in my

sacroiliac

> joints which started after I had my first child. My GP tells me

that

> it isn't psoriatic arthritis because I have no swelling of

> fingers/toes. I have been suffering with this pain for 20 years

and

> in the last five it has been really quite debilitating but my

doctors

> seem to think I'm making it up.

> Now I am suffering with high blood pressure (I see from your

comments

> that this is also common and may be due in part to the pain) but

have

> also read that there is a heart condition associated with

psoriasis.

> I would like to find out a bit more so that I can rule out all the

> bits that don't apply to me. Any suggestions please?

> It's funny, I always worked on the assumption that it was only a

skin

> complaint and that at least it couldn't get any worse but now I

find

> there are all sorts of nasties associated with it..... and I

thought I

> was just getting old. Any thoughts/feedback much appreciated.

> Thanks Ellie

>

[Guest guest]

Hi ,

Thanks so much for your advice and feedback!

I am sorry to hear you are doing so badly and have had so much

surgery, you are clearly a very brave woman!

I guess I have been lucky to avoid the anti inflams because I suffer

stomach problems which they would have worsened although sometimes

the pain has had me climbing the walls. I will push for xrays but I

think that my GP already has me down as a hyperchondriac (however

you spell it) as I have been depressed for a while and suffered

symptoms similar to ME, just tired all the time! Funnily enough I

think I am more optimistic than I have been for ages probably due to

the conviction that I actually know now what is going on.

I have gained the impression from all the messages that long term,

these medications are pretty scary. I really hope that your doctors

can deal with/minimise the liver problems. I will be thinking of

you, keep me posted.

Best wishes Ellie

>

> ellei, I was told the same thing about it being :only a skin

condition " and

> suffered for years . MY hands which showed very little swelling

are badly

> damaged and unfixable . MAKE the doctor do xrays . I know what you

are going

> through . I am an r. n. and no one listened to me either . I am

furious . Dont let

> this happen to you . I suffered for years . and NO xrays . I just

had both

> hips replaced and had my right one done again . I had untreated

hip displasia and

> no one did xrays . i went to a rhematologist every 8 weeks for 9

years .

> SPEAK UP . dont end up like me .Now I have an enlarged liver from

all the

> methotrexate and antiinflamatories [and ws never given pain meds ]

I dont drink or

> have high cholesterol so theliver problem is not from that..

> cathy form ma

>

>

>

[Guest guest]

Just to let you know im still around and reading your posts. its 8

days now until finally goes to the nuerologist.

I re asked my family of any problems that they have had and there are a couple

of things that have popped up.

my sister has a curved spine in which i never knew going back down my mums side

is a little hard as she had not seen her parents or had contact with them for

many years.Mum has had surgery for what she says was because her vertabrae had

crumbled her hands shake very badly but she is not forward in giving information

as it seems she doesnt want anything wrong with her family.

My eldest son who is 19 yesterday had a medical for aquiring

a job and was told he had the body of an old man via his muscles. he

layed on the floor in front of me and is unable to lift his legs off

the ground very far, his finger next to his pinky he is unable to

straighten like the rest when he makes a fist.

I spoke to my ex mother in law briefly who says her youngest had back problems

was never given a name but was taught by a doc how to sit properly etc.

My mum i can remember as a child always had back problems to the

extent she couldnt walk.I have problems with my right hip which

protrudes so badly i cant wear skirts and the pain i get in it can

sometimes be awful i use anti inflammatories to help. I had just

presumed it was how things turned out from my horse riding years.

At the gym whan i am on the walking machine my right side of my feet

get like a tingling sensation in them.None of our toes lay flat and

we always wear our shoes out on the inner side of the heel.Just lots

of little things here an there that they say they thought it was

normal and until he is actually diagnosed with anything i guess it

is.

Its amazing when it comes to genes testing how people shut down

because there could never ever be anything coming from their side of

the family.

I have noticed with that he cant squeeze very hard

with his hands especially first thing in the morning and his little

finger will not go flat like the rest of his hand when holding it

out straight.

There has been talk throught the physios earlier on of

putting him in long term traction as his hips dont seem to be

sitting properly so wether that is spine related or not will yet to

be seen.

Any way sorry for gabbling on im grasping at anything to

finally get a diagnosis of ryan wether it be cmt or something else

mostly to make him feel ok. he hates what ever this is.May every one

be having a great day/night and best wishes to you all

Lesley