Bit fed up and confused

maud48

Haven't posted for a while, been feeling a bit fed up and confused.
GP said according to my symptoms and blood tests probably had PA not OA or probably both but not to worry as the treatment is the same.
Last week went for an orthapedic app and x-ray on my supposedly OA knee and they couldn't see any signs of OA. So now waiting for more blood tests and an MRI scan.
I spoke to so the helpline who were incredibly helpful, have insisted GP refers me to a rheumy so am no also waiting for that. Judging by past experience it might be 9 months or more so might go private but will wait for the knee results first.
I've thought all along I might have PA as I have all the symptoms including psoriasis and badly affected nails but when I saw the rheumy over a year ago, after waiting nearly a year, he just looked at me (no Xrays or blood tests) told me I had OA, discharged me and told me to take paracetamol.
It's hard to do all this insisting as it makes me feel like a complaining hypocondriac but I just want to know what I have, then I can deal with it and get on ith the rest of my life. At the moment I'm feeling rather in limbo,
maudx

elnafinn

Hi Maud

Good to hear from you but sorry to read you are a bit down at the moment.

You just have to keep saying to yourself that you are not making this all up and as you may have read from other peeps postings on here, we do sometimes have to fight for the right medical attention. It should not be so, but that is how it is sometimes. :roll: We gain knowledge from this forum and other people's experiences and then can begin to feel more confident in "demanding" or "insisting" on certain referrals or whatever. We begin to know more about what we are talking about and probably know more than the medics sometimes :oops: Sounds like the rheumi you saw was a waste of space. If you have to see him again you will be more confident in having a more in depth discussion with him, if you do not agree with what he is saying to you. I do hope you do not have to wait 9 months for an appointment.

I wish you well,

Luv
Elna x

maud48

Thanks Elna
Know really there is something wrong with me. I've just tried to hoover one room and am in a lot of pain which I know from previous experience will last for the rest of today.
As you say it's so worrying that we don't get anywhere without making a fuss and insisting. If I hadn't found this group I wouldn't even have KNOWN what possibilities there were. Think of all the poor people trying to cope all alone,
maudx

elnafinn

Hi Maud

Yes, this site is truly remarkable and yes, it is totally abnormal to be in a lot of pain after hoovering one room. Give short thrift to anyone who tells you otherwise. You and I may not be youngsters anymore but we are not shirkers and we sure know what we should be capable of, at our age.

Chin up, Maud and I hope your discomfort does not last for the rest of the day.

Luv
Elna x

joyful164

Hello Maud
I really feel for you Maud, you are really struggling at the moment, and I would ask your dr to try and get Rheumatologist to bring your appt forward, or at best, see if you can go on the cancellation list. So, if someone cancels, you are contactable.

The long cold winters hasn't helped either.

And don't ever think you are wasting anyones time either. If you are in pain you need help.
And keep posting because we are all here to help you

joy

maud48

Thank you Joy and Elna
I know everyone on this site is so ready to help but have been trying to get everything organised in my head so I can be positive about it without moaning.
It's quite alarming to think I probably have 2 sorts of arfur but also reassuring to know that if I can find out about it then it can be properly treated and I won't have to be in so much pain all the time. I know you have both as well Joy.
How is you art going Joy? I'd love to see some, especially as I do it as well (keeps me sane to escape to my painting and photography) and taught it until recently.
maudx

annie_mial

I should think you would be confused and fed up, Maud......if it can be managed, I would go down the private route initially, it shouldn't be like that, but you need answers and treatment fast!

I'm not the most pushy person to say the least of it, but in your shoes I'd be having a tantrum and spitting out my dummy. I'd be insisting on having notice taken of what I was saying and not what they wanted to think I was saying.

Lots of us peeps have 2 or more lots of arfur..........it just gives one a chance of a rest now and again!

Love
Annie

dorcas

Hi Maud,

I for one think that the rheumy you saw a year ago is an absolute PRAT!

Unbelievable he didn't immediately want to check for PsA when you already have psoriasis and the tell tale nail bed changes!

and small wonder (duh) that the xray didn't confirm OA..if that's not what you've got! makes me fizzzzz!!!

whatever you decide to do...don't go back to see him!!! ask to be referred elsewhere!

it's rotten luck to have been seen by an idiot and then have to wait yet again to get a proper diagnosis....if going private gets you seen quickly...and more importantly gets you a diagnosis then go for it.

Only word of caution I have is that it can take a bit of time for them to confirm if it's PsA as it doesn't give a positive rheumatoid factor.

good luck...keep your chin up and keep on posting so we can support you!! irisx

ritwren

Hi Maud, what a rotten time you're having. I just wanted to add my support to you. Getting a diagnosis can take ages but it seems to me that you definately have been misdiagnosed by the last Consultant you saw. I believe I was mis diagnosed a few years ago in a similar situation to yours. I too have PA and some OA as well and am now on methotrexate which has definately helped. I hope you get a proper diagnosis soon and started on some treatment if that's the best thing. Hold on in there, take care.
rita

skezier

Hi Maud,

I am sorry its all dragging on for you there. I really hope it wont be the same Rumo this time cus I agree with iris about that one! I got pa as well and its a clinical diagnosis rather than a blood one so hopefully this next one will be quicker and better. I don't know if you can hurry the appointment up? Here they have urgent appointment spaces and if there is the same system there maybe you could be seen much quicker, it might be worth asking? Take care and for a min go easy on your self and sending you a ((( ))) Cris x

penfactor

Hello there
I see you are next going to have an MRI scan from my own experience with both knee & hip this is crucial for diagnosis of OA, at least. My own consultant could not confirm mine until I'd had these. I know it's horrible waiting for all these things but there is obviously something causing your pain. Sorry don't know anything about PA but the previous posters have given some sound advice there.
Hugs from me & keep in touch with us all here
love Pennie X

maud48

Thanks everyone for your support. Had the MRI scan yesterday as I got a cancellation. I'll see the ortho consultant again on 18th March so hopefully will get some answers then although apparently he can't prescribe but has to refer me to a rheumy.
Having a flare up right now, haven't slept at all well the last 2 nights because of pain in the neck and shoulders and now have a bad headache, really tired and hurt all over.
Still hopefully when I get some answers I'll be able to get some treatment that helps,
maudx

woodbon

Hello Maud,
That sounds like a terrible wait! Can your GP be persuded to ask for a quicker appointment as you have been hanging on, waiting for a diagnosis for such a long time? I think that I would ask first, it seems so unfair to have to pay for reasonable treatment.

I am glad to hear from you again, it has been a while, and I'm glad you've come back!

Lots of love Suexxx