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Date: 07.08.2009
From: Kirsty

Subject: In between diagnosis.

Hi all,
I had my first appointment with the Rheumy on Tuesday and he told me he suspected Rheumatoid Arthritis. I had X-Rays on my hands and feet and they were both fine and the bloods were okay. Under physical examination my hands, knees and shoulders were what he suspected had the arthritis, however I need to go back to have an ultra-sound on my hands and feet.

The nurse who took my b/p was surprised at it being 149/74 because I'm only 18, which apparently isn't great.

I was on Dicoflenax (50 mg, three times a day) but he prescribed Naproxen (500 mg, twice a day) along with 8 paracetamol and Nifedipine to treat my Raynaud's.

It's a bit scary being between diagnosis because people ask what's wrong and you don't know yourself. VERY scared at the moment.

Take care,
Kirsty xxx
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Date: 07.08.2009
From: val h

Subject: Re: In between diagnosis.

hi glad some one diagnosing u at least u will get treatment u need. belive me it is worse when they say its one thing but then u r sure they r wrong back at gp on 17th things not to good at moment your treatment sounds nearly same as mine and was told oa but only had bloods will see what they do when i go back would be great to know what it is. your blood pressure was prob up because of whet u going through some chemists do it for free so call in when in town u wont be so worried then glad they sorting u out and hope meds work 4 u hope u dont have to wait to long to go back dont be scared u have been through worst bit getting them to belive u and when they know 4 sure u will get lotts of good advice from them that know on here . have good day val :-)
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Date: 07.08.2009
From: Jill

Subject: Re: In between diagnosis.

Hi Kirsty (((hugs for U )))) we give out ltos hugs in here for everyone....think most of us started having symptoms in 20s...mine was...in 40s summat now lo..... Look think pos as val said, scary I know, but at lest now u will get somewhere....keep diary for rhummy etc...sure u read previous posts on this... take someone with u next time, they can mb ask questions for u on your behalf if u feel worrried...also once u get the final diagnosis, U will get the best treatment that is correct for u ok.... it will dampen down your symptoms and stoop further detirorating(cant spell that)... so stay upbeat ok.... also about your Reynauds, think my daughter may have that.....cld u post that in here so we can know more about that...her hands go purple in cold, doenst take long out in cold for that to happen either, she is 23, she i always freezzing....wot other symptonms r there, I know i can gooogle it etc, but id rather hear from u, an expert...thanks

Love Jill x
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Date: 08.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Hey Val, thanks for you message, much appreciated! I would rather them get it right at first - I see what you're saying!

Jill, Raynaud's is a funny old thing. You can have 3 colour changes (white, blue and red), but not everyone goes through all 3, I only get pale and bright red. It can affect your hands, feet, ears, nose and lips, and it's usually painful when your hands etc, are warming up, because this is when you blood vessels open again from being in the cold. It can happen in a slight change of temperature and sometimes in stressful situations.

Is your daughter seeing a doctor? It would be a good idea to see one :)

Have your symptoms worsened as you have got older?

Kirsty xxx
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Date: 09.08.2009
From: vicky

Subject: Re: In between diagnosis.

Hiya Kirsty,

I was were you were not that long ago but have been told i have now got rhmertoid artheritus. It is very scary but your rhmer team will help you through this time. Im 24 n have suffered quite badly but i have conflicting problems. The ultra-sound takes a few min and mine shown nothing up but it hurt cuz of the swellin on my hands! Hope you get a full diagnoises soon.
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Date: 09.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Hi kirsty hope you get your diagnosis soon. The treatment for all forms of arthritis is the same, the meds do take at least two months to kick in so bear with them. We all suffer arthritis in different ways that's why it's so hard to get the right diagnosis in the begining.
Try to stay posative as possible. Not easy when your in pain. But it does help. The meds will help prevent future damage to your joints so you have more mobility in the future.
I've had RA for over 20yrs. Been on naproxen in the begining did not have any side effects. On anti TNF injections now.
Hope your feeling better soon take care
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Date: 11.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Anti TNF injections? That sounds really scary!

I just have to let you know this because it's the funniest thing.

A week ago I had my first appointment with the Rheumy, and he said that I should take different tablets and he'll send a letter through about an ultrasound on my hands and feet to look for swelling. He said to expect to wait 4-6 weeks for the appointment, but the letter should be through soon.

So I've been waiting for a letter/the postman for about 5 days...and it feels like weeks!

Second - The Rheumy said to stop taking the tablets I have 24 hours before I have the ultrasound...but has only given me tablets to last 2 weeks!

I think I'll feel better when I have the appointment through :)

xxx
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Date: 11.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Hi kirsty pleased you've seen him know what you mean about the wait. Re you tablets they do only give you a couple of weeks worth at the hospital you'll have to contact your Gp to renew your prescrition. No prob
w hat has he put you on now?
Take care lol
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Date: 11.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Still on Naproxen.
Thanks for the info about renewing the prescription.

Take care yourself :)
xx
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Date: 12.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Hi kirsty has your rheumy asked you to make another appointment with him to get your results of the ultra sound. I think when you get your letter for your appointment date. I would ring your rheumys secretary being very nice to her. And ask for am appointment with him for the week after, explaining to her that it is to get the results of the test. Other wise it could take months. We have to be proactive or things will just drag on unfortunatly. Take care xx
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Date: 12.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

No he hasn't, I'm still waiting for the appointment for the ultrasound to come through, and the surgery hasn't heard anything from him, so they can't prescribe me anymore tablets. I have enough until Tuesday morning so I'm on the war path if I haven't received anything by then...or I may give it until Friday.

xx
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Date: 12.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Good for you Kirsty unfortunatly you have to keep on top of them in the begining till they take you seriously. Can't let them get away with fobbing you off, they're very good at that. Be polite but persistant. She who shouts and stamps her feet gets the treatment they need so to speak. ..... Good luck and let us know how you got on xx
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Date: 12.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Just another thought I would go into the surgery if you get no joy on Friday with your bottle to tabs from the hospital. So they can see what your on.. Proof. They can always ring your rheumy up or email him. It's not good for you to be without meds because it takes sometime approx 2 months to kick in. Be polite but firm. Xxxx
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Date: 13.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Post came today but no joy about appointment letters. Tomorrow will tell though! I'll let you know :)
Take care xx
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Date: 14.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

hi fingers crossed for todays post good luck thinking of u :-)
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Date: 21.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Hey Val, thanks for your message, sorry I haven't been on sooner!

No luck with appointment dates yet, but the doctors have given me more tablets...I used Lynne's 'be polite but firm' advice :)
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Date: 24.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Hi Kirsty had they sorted you out yet with your tabs and the appointment? let us know how you got on Take care xxx
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Date: 24.08.2009
From: jilll the goood twin pmsl

Subject: Re: In between diagnosis.

Hi Val and Kirsty...think my Twin was on the other night...enebriated!!!lolol rofllmaooooooooooooooooooooooo
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Date: 24.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

hi goody two shoes when your other half coming back lol
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Date: 24.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Hi Lynne,
I still have no appointment letter and it will be 3 weeks tomorrow since I had been to see him. He told me it would take 4-6 weeks.
The doctors have given more tablets which is very useful - although they haven't heard from my Rheumy yet, and the doctor I'm seeing doesn't work during school holidays. Useful.

Jill - I really think your bad twin should come back on...the topics of conversation she was coming out with! :) lol

xxx
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Date: 25.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

she is like that even when not had a drink so much fun and great pal
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Date: 25.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Hi kirsty still no appointment grrrr... You must be frustrated. Why don't t
you try ringing the ultra sound dept tell them something like ... I'm going on holiday and don't want to miss my appointment cane you tell me when I'm booked in. Works evert time. Hope your well.
Take care xxxx
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Date: 25.08.2009
From: Jill

Subject: Re: In between diagnosis.

well gals I try to be dignified lol....so my other crazy part of me I try and keep subdued.... cos it gets me into big twubble... i can go over the top....anyway...ya never know... shes alwyas lurking about here and there hehhahehhahe...
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Date: 25.08.2009
From: jill

Subject: Re: In between diagnosis.

Hi Kirsty, thing is in my experience, if a surgeon says he will c u in 6 weeks, u can be sure it will be 4 months, their waiting lists they dont deal with, its a different department, also ive found out, that some of these appointment departments often look at the letters and they decide if its urgent or not....was told that a while back, that is Y i now go str8 to the secretarys of the surgeons, or the rhummy secretarys, I ring them Like Lynne does too, didnt even know we had access to them either years ago.... ive learnt so much over the years like Lynneypoos(lol shes gooona killlll me for calling her that) I dont take no crap, im dignified when calling, tactful etc, not stroppy cos then they wont help, also after a while the secretarys get to know u, read your file etc, and will get u in asap, if they know U r bad enufff....honest dont go bk via the GP, ring them yaself...mb some hospitals wont allowit, but every hops ive ever dealt with, allow this contact between patient and secretary....so Guys remember that also!! x
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Date: 26.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

GUESS WHAT?!?!?!
Post came :)
I HAVE MY APPOINTMENT FOR MY ULTRASOUND ON MY HANDS AND FEET! FINALLY! YAY!
1st September (Tuesday) at 5:30 pm.
:D :D :D :D :D :D :D :D :D :D :D :D :D

Although I was told to stop taking my medication 24 hours before, but there's nothing on the letter, so I've left a message with my Rheumy's Secretary.

Party Time! Hahaha lol :D
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Date: 26.08.2009
From: Lynne

Subject: Re: In between diagnosis.

That's Brill kirsty

pleased for you lolololololololollollololololol

xxxxxxxxxxxxxxxxxxxxxx
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Date: 30.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Hey, turns out I do have to stop my meds 24 hours before I go in...so 3 O'CLock tomorrow is the last one lol
This is going to fun lol lol lol
xxx
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Date: 30.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Wishing you well . Take care and let us know how you get on sweetheart xxxxxxxxxxxxxxxx
I can't sleep you still up ????
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Date: 30.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

I am! Really far too hot to sleep!
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Date: 30.08.2009
From: Lynne

Subject: Re: In between diagnosis.

You hot hot girlie wow me feeling the cold cold. .... Bree.. Got my heating on. Thought it was raining down yours ?
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Date: 30.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

It's is, it's the pathetic excuse for rain that gets you soaked without realising...
I think I've got s temperature lol
xxx
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Date: 30.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Hope your not ill .. Look after your self sweetheart ....
Xxxx xxxx
hey doing this from my iPhone soz spelling off a bit xc
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Date: 30.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Wow you have an iPhone...I can't ever work those things!!!
xx
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Date: 30.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Yeh sweetie at in my lounge doing this. Awe hope you not ill

take care XXXXXXX
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Date: 31.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

hi kirsty that is great news fingers crossed u early on list and no hold ups. do not forget to let us know how u getting on
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Date: 31.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

I won't forget...
Not sleeping well Val?
Stuck my head out the window and had a face full of rain lol. Look like a drowned rat! I'm not ill, fighting fit me lol lol
xxxx
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Date: 31.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Bi kirstyike thing tecky bit do jot understand them sometime trying todeal with facebook hit donet like it prefare face to face or email insteD xxp
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Date: 31.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

not to much fighting not been in long went out on town with oh as no work tomorrow lol
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Date: 31.08.2009
From: Lynne

Subject: Re: In between diagnosis.

Oh sugar my posts nOt comim out right. Hope your well xx.
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Date: 31.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Relaxing day tomorrow then! Take it easy!
Lynne, I really didn't understand your post lol lol!
xxx
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Date: 31.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

kirsty have lovely relaxing day. lynne did not understand either lol
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Date: 31.08.2009
From: Lynne

Subject: Re: In between diagnosis.

It's that predictive text on the I phone I type something in but cos letters are so close together I sometimes hit a wrong letter then it puts a different word up. Meant to say I don't like facebook so much it a little techey for me prefer face to face calling or email. Soz kirsty for confusion. When I get tired I don't check my posts as thoroughly as I should. I will refrain from posting after tea time from now on
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Date: 31.08.2009
From: jill

Subject: Re: In between diagnosis.

im a lazy cow...webt bed at 7.15 last night, just got up, and scoffing home made strawberry Jam....blidddy yum...lol went to the local Flower Fest at local village church... pmsl bought me some jam...and some crime books....lol was in church Gravegrounds....and i saw a book saying summat like...Y do I feel Like Shit!! honest...true...me and mic larfed, then he lood at a book and pointed out the word bastard(excuse bad words) but had to tell u, reason was so bliddy funny, was becos the books were prob from all the old biddies in our village, its full of em....was funny at the time...hope everyone well today...x
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Date: 31.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

hi girl wish i had some of that jam sounds lovely not had breakfast yet could not be bothered lol will get up off chair now and get some lol. went out with oh last night managed to wear my new shoe and they did not hurt at all lol feet not swolen so could get them on again did not drink but still forgot to take meds last night so been in bit of pain this morning oh made me cup of tea bless him
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Date: 31.08.2009
From: jill

Subject: Re: In between diagnosis.

Val i can forget to take mine... fell asleep last nitre and missed my meds....so i took them at 3 this morning....omg just as im tyuping this to u, ive just realised wot ive done, I took another dose at 9Q....blimey....time will tell....cant beleive its just come to me as im typing this too u.....frightened now....has too much....7 hiurs too early.....ohwell, will scofff more jam n toast and soak up the blighters...where did ya go last night Val....was u ok?
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Date: 31.08.2009
From: jill

Subject: Re: In between diagnosis.

*spelling is bad today soz*
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Date: 31.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

just a small pub crawl around town(4 pubs) u do see some sights, do not go out often as to much effort. but oh likes to when he got monday off and chilled out all day yesterday and will today. made nice change got chinese on way home so was lovely. u r as bad as me with these meds morning r easy as hrt has days on them its evening that give me a problem when tired(tried that three different ways lol still did not look right)
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Date: 31.08.2009
From: jill

Subject: Re: In between diagnosis.

awwwww seems was a fab nite.... is that the name of your hubby, oh ?gld u got chance to wear ya new shoes x
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Date: 31.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Jill, are you okay?
Little worried about your meds and stuff.
xxxx
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Date: 31.08.2009
From: jill

Subject: Re: In between diagnosis.

Hi Kirsty...im ok thanku for asking.....just felt a bit weird.... all worn offf now...felt like I had a hangover, but without the headache.....stumachw was churning lots lol.... how r u today?
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Date: 31.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

I'm okay, bit stiff now - I had to stop taking meds at 3:00 for my appointment tomorrow lol
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Date: 31.08.2009
From: jill

Subject: Re: In between diagnosis.

Kirssty, ive got a,poo memeory, r u seeing rhummy tomoz? or just having bloods done etc?
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Date: 31.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

hi hope scan goes ok think that what it was lol got jill memeory share it with her lol. will be thinking of u .sat here in my snoopy pjs pink with harts on(thought would share that with u). just got out of bath so nice and warm . oldest lad got back safe from where ever it was he went just took 10 messages to sort trains out lol for him. told him if he will travel on a bank holiday what does he expect lol
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Date: 31.08.2009
From: jill

Subject: Re: In between diagnosis.

LOLOL where he go Val......just had a luffly shower....prefer them to a barf!....
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Date: 31.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

some where other side of liverpool i think. did tell me but head like a sponge. went to meet young lady lol
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Date: 31.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

I'm having an ultrasound on my hands and feet done tomorrow to look for swelling I think the rheumy said.

LOL, I got stuck at Liskeard for an hour once on the way to Looe by train!

and I have stripy pjs on :) Cuppa tea in a moment I think :)
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Date: 31.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

hey could do with cup of t mines earl grey no milk please . he missed one train to full to get on was not happy bless him good lad can put it on here as he does not come on lol
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Date: 31.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Aww :)
*Throws Val a cuppa*
I hope you caught that!
xx
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Date: 31.08.2009
From: val h :-)

Subject: Re: In between diagnosis.

it best one today. just got it before spilt on lap top lol
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Date: 31.08.2009
From: j

Subject: Re: In between diagnosis.

goood luckski tomoz Kirsty, got an appt for the results as well? if im having an xray, or MRI scan and have to go bk to see rhummy, always make sure once U have the apppt date for the scnas etc, that U ring his sec, tell her that u need the follow up apppt for the results and give her the date U r getting the scan, that way u save time.....just a little tip for any future times ok x
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Date: 31.08.2009
From: Kirsty

Subject: Re: In between diagnosis.

Thank you :)
It says on a bit of paper do not ring to get your results. You will get them from your GP or rheumy, so I'll just have to wait and see.
xxx
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Date: 31.08.2009
From: j

Subject: Re: In between diagnosis.

ok...but if u havnt heard by 2nd week,,, ring regardlesss,sometimes they wont bother until they see u next at the next apppt, and then telll u the result...dont eait tooo long is wot im getting at lol
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Date: 01.09.2009
From: Lynne

Subject: Re: In between diagnosis.

Our jill is right don't wait too long two weeks is plenty for them to have your results ready. Good lick for today xxx
take care xxxxx
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Date: 01.09.2009
From: Lynne

Subject: Re: In between diagnosis.

God my spelling off again meant good LUCK

take care xxx
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Date: 01.09.2009
From: val h :-)

Subject: Re: In between diagnosis.

keeps us on our toes lynne
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Date: 01.09.2009
From: Kirsty

Subject: Re: In between diagnosis.

Hey all,
Right, had the Ultrasound done n my hand and feet.
The Ultrasound guy said everything was normal (no inflammation or anything) so he doesn't know what it is, and he said I'll probably never know, but I'll just have to live with it.

He's sent a message to the rheumy saying everything's fine, and I'm supposed to be seeing the Rheumy again soon, who'll probably say I'm making a fuss over nothing.

Hope you're all okay
xxx
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Date: 01.09.2009
From: val h :-)

Subject: Re: In between diagnosis.

hi if u were in pain u were not making a fuss over nothing. so r u still getting pain if so tell him sure other checks they can do
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Date: 01.09.2009
From: Kirsty

Subject: Re: In between diagnosis.

I guess, but my bloods were fine, my X-rays were fine and the ultrasound was fine. So all they can go by is me saying it hurts...

I don't mean to make that sound like I'm snapping at you. Just tired and irritated lol
xxxx
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Date: 01.09.2009
From: Lynne

Subject: Re: In between diagnosis.

It's okay kirsty you had hard day and it pixxxxd you off. It's hard not getting to the bottom of your illness. Your not shouting over nothing in the early stages it is very hard to get diagnosed. Know that's no comfort . Keep telling them where it hurts. Aches etc you'll get there on the end. Sorry you've not got a resolution yet. We'll be thinking of you sending you good vibes and wishing you well. Take care xxxxx
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Date: 01.09.2009
From: jeanette

Subject: Re: In between diagnosis.

hi kirsty dont give up i went for over a year and they kept saying um ah stroke of chin lots of tests came back fine .left it for another year and then all of a sudden mrs roberts you have rhumatoid athritus in your feet and it is quite advanced all ofa sudden and in both wrists when you have this illness it dont just go away keep going to doctor and make shure you see a phisio mine was great gave me splints which i do wear on hands i said im not making it up like you would but it is avery difficult to diagnose hope you feel better soon .
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Date: 01.09.2009
From: val h :-)

Subject: Re: In between diagnosis.

hi quite understand how u must feel, but if u have pain there is a reason for it. so do not let them fob u off. i know u will have got your self all worked up, to have some idea what it is that causing the pain and the dissapointment must be very bad but they will get there in the end . (((hug))) i know will not make things better but all we can do from here sorry things did not go as u would have wished
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Date: 01.09.2009
From: Kirsty

Subject: Re: In between diagnosis.

It's not that I want them to say 'you have rheumatoid arthritis, deal with it' I just want them to say something...else it feels like it's all in my head and I'm just imagining everything. It's just the fact that the ultrasound guy said 'you'll probably never know what it is, and you'll just have to live with it' It wasn't even my Rheumy who told me.

Big love and hugs to you all.
xxxx
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Date: 01.09.2009
From: Lynne

Subject: Re: In between diagnosis.

Hi just popped in we understand nobody want this illness. But you still want to know what's happening to you and put a name on it. Frustrating I know. Take care sleep tight xx
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Date: 01.09.2009
From: Kirsty

Subject: Re: In between diagnosis.

Hey,
thanks guys.
I think I'm just irritated because I'm tired.
Off to sleep now.
Night night, hope you all sleep well xxx
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Date: 01.09.2009
From: Lynne

Subject: Re: In between diagnosis.

Right back at you sweetie nighty nighty sleep tight xxxx
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Date: 01.09.2009
From: Jaen

Subject: Re: In between diagnosis.

Good night to you all
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Date: 02.09.2009
From: val h :-)

Subject: Re: In between diagnosis.

hi kirsty hope u got some sleep will never forget the releaf when bloods came back with inflimation in as had just about convinced my self it was all in my head lol. we all go through it i do not know for certain what wrong doc says oa .as u know i have been putting off going to rhumy for the same reason what if he finds nothing lol. i am a scardy cat,but will go as things getting bad ,i know the pain u get is real we all do so know they will find something in the end this was just one check there r other tests i know it would have been nice if it could have been sorted before u started uni but not looking like it will. u will cope and do well stick with it have a good day
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