Newbie: Hello everyone, I have only be diagnosed for a... - NRAS

NRAS

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Amg0407 profile image
6 Replies

Hello everyone,

I have only be diagnosed for a month, but have had the symptoms for over a year and has taken all this time to get it diagnosed. Still waiting for an appointment to see rheumatologist which I hope will be soon. Gp has prescribed anti-inflammatory and painkillers but feel it is getting worst and now need to see the right people to sort this out before I go mad.

How long should referrals take? I seen the orthopaedic registrar who got the bloods done as he suspected that had ra when explained the symptoms as thought my carpel tunnel syndrome had returned when my thumb went completely numb and has been now for nearly a year with no sign of returning. I do hope I hear soon and get this sorted.

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Amg0407
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6 Replies
mildy profile image
mildy

morning cant you sleep either this ra certainly has something to answer for doesnt it i cant remember how long my referral took to come through but i think its a couple of weeks from seeing your gp thats how long my referral was to see a physio have you thought about ringing the department at your hospital to see if an appointment has been made for you was you given a rhemy nurse if so you could also try her to see if she could do anything to hurry it up abit,hope you start to feel abit better soon take care,mildyxx

Hello Amg,

Welcome to the site. You must be going through a scary and uncertain time at the moment.

I think the time it takes for referral has a lot to do with how busy your rheumatologist is but I believe that there is a government standard that all referrals should be seen within 12 weeks. - Having said that, I agree with Mildy that it won't do any harm to ring the rheumatology department to get an idea.

The NRAS main website also has a section which talks you through the various stages from symptoms to treatment and may be worth a read.

Take care. I hope you get an early appointment but, in the meantime, you have reached a great forum with loads of personal experience to share. x

magglen profile image
magglen

It is a disgrace to have to wait so long for an RA diagnosis which can be detected through blood tests. There was a long waiting list ot see the consultant for me but I was fortunate to be able to afford to go privately [cost me about £200 but well worth the expense]. Saw him the day after my GP made the referral and went straight on to Methotrexate. Wish I had gone to the GP sooner as I have quite a bit of deformity in fingers and toes. I put my joint pains down to old age! Same consultant followed me through under NHS. Now on anti TNF Etanercept which is a wonder drug

Best of luck.

newbie55 profile image
newbie55

I am just the same as you waiting for a referral appointment to come through from the hospital......... And Magglen as for the old age? I thought exactly the same, until the joint pain was very severe in my shoulder then the onset of shingles because of the low immunity..... I hope they sort me out soon! I cant take anti imflamatories because I have a stomach ulcer so GP very reluctant to prescribe anything other than Paracetamol..... Good luck Amg I hope the both you and I get our appointments soon!

Lorraine_NRAS profile image
Lorraine_NRAS

Hi

This is really a very difficult and frustrating time for you and I would suggest, as have previous posts, that you chase the referral and encourage your GP to try to speed things up too.

Referral times vary considerably according to local circumstances and practices. The Standards of Care for Inflammatory Arthritis (IA) were written in 2004 and aimed to describe what patients should expect from the service. In 2004 they recommended that anyone with suspected IA should be seen by a specialist within 12 weeks of referral and hoped that over time this could be reduced to 6 weeks. It would seem however that this is still not the case for everyone and that referral times in some areas are much worse than in others. It is fairly common for us to hear that people do go down a private route to get an initial consultation and then transfer to NHS care to try to speed up the process. The cost is not inconsiderable and hopefully will not be necessary for you but in extremis may be something to think about if your local service has long waiting times.

Best wishes

Lorraine

newbie55 profile image
newbie55 in reply to Lorraine_NRAS

Thanks Lorraine, I have now received my appointment for 13th August, I'm not sure what to expect, to be honest the GP wasn't very forthcoming with any info and the only things I have found out about RA has been on here!

My shoulder has improved a lot and my shingles has also seemed to have subsided, but I have noticed in the last couple of weeks that my knuckles are swollen on my hands and feel like I have punched a wall some days! The simplest task like buttering a slice of bread has given me gyp! So I am imagining all of this is 'normal' and that hopefully when I have my rheumy appointment these joints will be looked at and assessed.

I feel a bit miffed that it would appear that being diagnosed with RA is quite a serious thing and yet to the GP it isn't even worth the time to discuss what to expect to happen to your body, drugs available or the like! Thank goodness there is this site!

Sorry that turned into a rant!

Thanks for replying to my post.

Sandie

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