LETTER FROM HOSPITAL - I AM SCARED

carola

Hello I hope you are all having a good day.

Just had a letter from Rheumy saying they think it is not RA I have but Polyarthritis caused by Systematic Lupus Erythematosus.

Don't know what the feck this is but a quick glance on a website has dissovled me into tears.

Sorry, I am sitting here by myself and freaking out.

dippydoodah

im so sorry to hear you are upset. im afraid i too dont know much about it but i wanted to say im sure someone will be along who can help or maybe put your mind at ease someone who knows more about it...

have you tried posting on the helpline forum? maybe someone can explain it for you.

i hope you get some answers and again am sorry to hear your upset.
caroline x

dreamdaisy

The interweb is the last source of info for you just now. Wise advice from the previous poster, contact the forum helpline team for sensible counsel, contact your GP for an appointment so that he can fuly explain the implications for you. I am so sorry, what a horrible thing to happen. DD

skezier

Hi Carol,

First of all I am sorry you have got upset with the letter. Its never nice to read something has changed and googling it is not always the best way. I know there are people here who have one or both and they will be along soon to help you but what I wanted to say is it changes nothing in regards to you as a person. You have the same problems that you had yesterday and Carol you will cope flower and they can help you. Are they seeing you soon?

I know someone will be along who can really help but in the mean time I am leaving you a ((((( ))))) and your not alone really cus we are here. You hang in there and don't google any more. Luv and another ((( ))) Cris xx

cthornley

DD's advice is spot on...the web although wonderful in many ways is a good way to get yourself in a panic
my gut feeling is to get an appointment with the Rheumy whose diagnosis it was so that they can talk you through it step by step....can you phone the department and explain how much stress they have caused you by delivering the info this way and ask for an emergency appointment to put you at ease and start to plan treatment ?
Hope you get some answers soon
Chrissie

dreamdaisy

Lupus is another immune system thingy, isn't it? I don't know how many forms of it there are but I do know that one is characterised by a 'butterfly' rash, so-called because it is shaped like a butterfly. I suspect that treaments might overlap with RA stuff but I could be wrong. I am fairly sure that there are some on here with lupus, perhaps a search would yield some background information. I hope you are feeling a little better - is anyone there with you? Do you have a friend you could call on for company? DD

carola

Chrissie, Cris, DD and Caroline

Thankyou so much for your support.

I called the Rheumy's secretary and she doesn't answer he phone until 2pm!

Yes you are all correct in saying stop googling as I got into a right panic. The only sane thing is I am not phoning my Mum and Dad until I know what this is all about as don't want to stress them.

I am normally so positive and full of fighting spirit. The letter just knocked the wind out of my sails a bit. I will await my positivity to catch me!

I cannot express to you how much I value your support.

Hope you all are having a decent non arthritis day today my Friends.

Keep smiling, Carol x

lynnemarie

Hi
Poly means many and it is probably a immune system type, i too have a immune system type.

Lupus is to do with Blood, they will advise you further, i am sure once they get you on the right medication you will be fine.

I have found in my situation i would rather have what i have than RA anyway! - we are more unique!

love lots
x

carola

Lynnemarie

Many thanks for your post and it sounds like you are coping well therefore shall use this as inspiration.

Much positivity and thank you once again.

Carol x

dreamdaisy

You are allowed the occasional wobble. God knows we face some tough stuff between all of us. Your natural bounce will return. DD

angel1

Of course you`re freaking out Carol, because if nothing else that was a rather cruel - and unusual - way of delivering this news.

Try to remain as calm as possible until you have the chance to speak to your Rheumy. Make a list of all the things that I`m sure are rattling around in your head, and DON`T leave until you are satisfied that you have all the answers. If possible take someone - Mum? - with you, for support and back-up.

This has been a dreadful shock, but you will handle it once you know what you are facing. Fear of the unknown is the worst thing of all... Oh, and stay away from the blasted internet.......Much love.....Ange.

tillytop

Hi Carol
So sorry about your news and I think that delivering this diagnosis to you in a letter like that is absolutely unforgiveable!
Hope you have managed to speak to someone on the helpline for some support by now - and that you can get a rheumatology appointment asap. If you can't move this forward, can your GP help you to get an urgent appointment?
You WILL come through this, so hang on in there Carol.
Lots love Tilly xxx

carola

Tilley, Ange and DD

Thank you so much.

Yep, a little knowledge can be a dangerous and panicky thing!

Anyway, by posting my panic and reading all your words has calmed me down.

Until I make and see the Rheumy I shall focus upon ESA war re benefits!!

From the bottom of my heart I thank you all.
Keep smiling, Carol xx

tillytop

Hi Carol
That's right girl - channel the upset into something positive!
You amaze me with your fighting talk - I'm very impressed and could definitely do with taking a leaf out of your book!
Love Tilly xxx

frogmorton

Hi carola

Oh I am so sorry you are so so worried :shock:

I know I would do exactly the same as you and go right in to panic-mode :roll:

Infornation gathereing iS the answer but not off the net :shock: eeeek!!! Scary thing that.

Once you have all the information - you will feel way better - and I think you are very very brave not to ring your Mum and Dad - I bet you need them just now

Is there anyone else you could ring? A friend?

Wont be long till 2pm I hope you get through very quickly.

Love and hugs

Toni xx

skezier

Hi Carol,

Glad this has helped you a bit and I know Annie and Joy can help you and when they see this they will. You know they do very well so don't think the other way. I agree once your treated you will be fine flower so stop reading that screen on the sites that tell you the worst scenario.....

You are allowed a wobble and this lot are always so good at topping them. Another ((( ))) and I agree that's not how they should have told you and they were out or order there! Luv Cris x

dreamdaisy

How's it going? DD

gickygawky

Hi Carola,

I just wanted to let you know I am thinking of you - it must have been quite a shock to receive the news like you did.

I thought it may also comfort you a little to know that a very dear friend of mine has SLE and although she takes meds to control things she is doing just fine, she has found her balance and has a very good life.

Now that you have a diagnosis things may be on the up for you as now there is something more concrete to work with- I hope that before long you feel better and are receiving exactly the treatment you need.

In the mean time try and stay positive and remember we will all be here to support you.


Arna x

caprica

Hi Carol,
I agree with the other posters - what a horrible way to deliver the news!!!! I would definitely complain about that.

I'm terrible for googling things too, and freaking myself out. What I do know about Lupus though, is that my mum's boyfriend's sister has it. She got diagnosed about 10 - 15 years ago but she's had problems all her life. Anyway, she is about 60 now but she's doing very well, she still works full time (now thinking about going part time) managing a doctor's surgery and goes away travelling on cruises all the time - she has to be very careful of the sun but she manages to lead a very active life.

I think the treatment is very very similar to RA, DMARDs and steroids for flare ups etc. And the good news actually is that the arthritis from Lupus isn't usually destructive, like with RA. So you don't have to worry about deformities.

I hope that you can dampen down your worries a bit and get to speak to a doctor soon! Wishing you the best xx

annie_mial

Hi Carol - I was diagnosed with Polyarthritis last year as they can't make up their minds whether I have SLE, RA or PA. Or possibly all three plus something else.

I have lost count of my medical conditions but I think it must be 7 or 8, with another possible 2 waiting in the wings. Don't worry, chuck, there is still light at the end of the tunnel. I am now on MTX and doing well - the medication for Lupus is usually the same as for RA or PA.

You have the right positive attitude, hang in there and see the Rheumy before you start getting bothered about it - and once you have seen the Rheumy you will be in the loop for ongoing treatment.

Annie

speedalong

Hi Carola, what a horrid way to find out. Lots of good advice already posted. Sending you some cyber support.

(((hugs)))

Speedy

dolittle

Hi Carol,
I've only just 'tuned in' had a bit of a day! Made me sad to read your posting this morning and hope you felt comforted by the 'folk' here.

I think to send you a letter with that information is the pits - it shouldn't be allowed. The same thing happened to me a few months ago but with a different problem. I've written to my GP about the issue and I've got a GP appt. tomorrow.

I cried a lot and worried a lot. Then when I'd got through that I got my mind back and made up my mind to take no notice of the info on the internet and look upon it as information overload. When I went back to the consultant I demanded to know why I was directed to that form of advice, instead of him discussing it with me and why he thought that approach was appropriate. He didn't know what to say and I wouldn't speak until he had fluffed his way to an apology.

Reading through all the replies and your later posts, I have to admire how you've now collected yourself together. From the condition I'm in, me and my GP have a suspicion that I'm in the same boat as you - shall we go round the bend together! (just my little joke). I'd be interested to hear how you get on and I'll let you know what happens in my yard - if you'd be interested. Would be nice to have a hand to hold. I'm scared out of my damned wits!!!!!!

Keep your chin up, chucks, I'll be thinking about you and hoping you get on OK (((( ))))s..
Do

scorpio

sorry to hear you position - poly just means many.......generally with regard to large joints, meaning shoulders, knee, elbows etc etc......rther than arthritis in one large joint and a few smaller joints.....which is oli (i think).......i have poly-articular psoriatic arthritis, meaning most bloody joints in the body...LOL

relax, and take care of yourself

regards, chris

marion1952

Dear Carol

What a dreadful way to receive the news!!

A close friend of mine has lupus - came on out of the blue when she was about 55 - but she still enjoys a great life - nice holidays (currently on a walking holiday in Europe but also goes on long-haul holidays), very good social life, musical activities, etc, etc.
Yes, she gets very annoyed when the lupus flares up, but she is much fitter and more active than I can manage (I have RA of just two years duration..) and I am younger than her!

You are a strong/upbeat person but you will need time to 'digest' the news - it took me about 8 months to accept that I had RA - and you must take this at your own pace...

There will be other people on this forum with lupus who will be able to give you better advice than I can.. but please keep posting and let us know how you get on with the rheumy appointment.

Marion x

joyful164

Hello Carole
I too, am amazed at the way you have been given this information. It should have been the consultant, someone to explain the options.
I'm a bit like Annie, in that I have had so many dx's, all of which I have googled, given myself at least 5 major heart attacks. :roll: Too much knowledge can do you a lot of harm. We take in too many scenarios, many of which will have no bearing on what you may or may not have.
All I can say is, speak to someone on the helpline as soon as possisble, certainly if you cannot get an early appt with your gp. This will put your mind at ease
The other week, I saw my consultant as a matter of urgency because I was pretty sure that I might have Giant Cell Artiritis, something that affects the blood vessel to the eye, could make you blind. As an artist, you can imagine how I felt. Anyway, dx was that I had not so I probably worried for nothing. All because I lookedon googl. Mind you, the symptoms were similar. It is natural to be worried and the sooner your anxieties are addressed the better. We're all thinking of you and send lots ofhugs. We have all been down this road ourselves. Think positive. goodnight.
Joy

PS Oh, by the way, the symptoms turned out to be a kidney infection, one that had been brewing for a couple of months.

abbie41

I agree about the internet thing, I googled RA and found some real scary stories about problems people have, far too much information!

Good luck with your hospital appointment, hope it all goes well xx