Thanks for the advice you all gave in my last blog, I phoned the hospital yesterday to find out where I was on the list for my first appointment only to be informed that they only received the referral letter from the ortho doctor on 7 June and would get an appointment in about 12 weeks since is only routine first appointment . Working this out it will be the beginning of September before I could be seen, they said that the referral stated that was routine and no urgency was required, iam going to contact my gp next week and see if she can push things on as don't think will last until September. Or as suggested in my blog newbie that go private for initial appointment and then transfer over to the NHS just to get this process started. It is so frustrating when seen ortho doctor he said would get an appointment quicker as was internal and not being referred by gp but guess not the case. Why is this not urgent I thought that the earlier you are treated the less aggressive it can be? Sorry for the whining but in pain as you will all know and getting me down which is impacting on the family, was an active person but have had to slow down which is not easy you feel that still super woman and can still do everything and so does the family. Looked after the grandson for a couple of hours yesterday and after he left had to go for lie down and sleep, which was not like me!! Sorry for the moan but just had to get that off my chest. Hopefully today will be a better day for everyone.!!!!
Aileen
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Amg0407
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Hi Aileen, you are well informed on this site and know that you should at least be seen earlier than that! get in touch with GP and ask for an urgent referral. Hope you have more luck than me, my GP has asked for an appt to be brought forward instead of me waiting untill August BUT that was weeks ago and it's July tomorrow guess another month waiting is possible unless I go mad in the mean time, I too think or thought I was superwoman, now can't even wash up without having to recover for an hour. Apparently this weather has had a lot to answer for being low brings us low too.
Hi Aileen, I had dreadful trouble getting an appointment and diagnosis and was advised in the end to go private by my Gp. I still had to wait a month for this but the rheumy advised at the private consultation that he'd transfer me to his nhs list to do blood tests etc to make diagnosis. Be warned, I still went to the back of the nhs list and had to wait in the queue like everyone else. Basically I'd have been better off just seeing him on the nhs in the first place and saving myself £170. I hope you get the help you need soon but try not to get too stressed fighting to be seen early. From what I've seen there is really not a lot you can do about the wait as the service is so underfunded. Take care
Paula x
It is important to be seen as early as possible but my GP felt this was a bit exaggerated and that actually we have a window of about a year or two before damage is actually done to our joints. That said he put me on Sulphasalazine himself because he knew it would be four months until his referral led to an appointment. I would say keep pushing and do it via your GP if possible. They get frustrated if you keep going to them so are more likely to push to get you seen sooner if they can't help you otherwise.
You shouldn't have to put up with being in loads of pain all the time though - ask your GP for oral steroids (the injections last longer and can mask the symptoms when you do get your consultation). These should help and also if they do that is taken by a rheumatologist as being further evidence of the inflammatory nature of your arthritis so helps with diagnosis. Good luck. Tilda x
I hate the waiting for app esp when you need to see someone now when in pain. I went to bed last night and was no sooner in until i had to get out i was so sore my legs were jumping around the bed
Thanks for the good advice, this site is very informative and have been interested in reading all the blogs it gives probably more info that doctors and consultants will tell you as you never get to actually speak properly to them as appointments times have to be meet. When first suspected had ra my gp gave me a leaflet and told to read it and would explain the condition. She has been helpful and has started me on anti-fl and pain killers and is sympathic but she feels that any other drugs to be prescribed are better done by rheumy. I first showed signs last year, could have been long as felt that since turn 45 two years ago everything has gone down hill on the health side. I have bad pain in my hands and have lost feeling in my right thumb now my neck shoulders arms and knees are painful and have a lack of energy for over a year, it was thought that my carpal tunnel syndrome had returned even though had been operated on both hands about 9years ago, but I understand that this goes with ra. Just now trying to get my head around all this and want to get things moving to find out if I have joint damage or not and try and deal with this. I would like to find out if still ok to keep up with riding my horse or if this could do damage to any of my joints and if need to be careful when out riding. Just hope the gp can get this moved on when contact her next week also going to see her about this pain in my neck and knees. Will update when I hear something.
Many thanks for the good advice been getting.
Aileen
Hi there,
I've got a provisional diagnosis of Psoriatic Arthritis but as regards joint damage I don't think it's any different from RA.
My left knee has been extremely swollen since before last Christmas. I eventually saw a Rheumatologist on 11th June. I was initially sent to an Orthopaedic Consultant in March & the x-rays showed some osteoarthritis but mainly in the knee-cap I believe, not the main weight-bearing joint.
Earlier this week I found out that I now do have secondary osteoarthritis (i.e. caused by my inflammatory arthritis) in that weight-bearing joint. Does not surprise me as it has started hurting again & I'm limping badly even tho' I had a steroid injection in it just 2 weeks ago. Real damage seems to have been done in less than 3 months.
I have found that estimates of how long RA takes to damage joints vary widely. The main difference of opinion is 'it can happen very quickly' versus 'it takes six months to a year'. Do not be fobbed off! My son said to me 'a squeaky door gets the most oil' - didn't realise he had such a wise old head on his shoulders!
My cardiologist made a referral to another hospital for a cardiac MRI on the 23rd May but the new secretary said she only got it on the 12th June nearly 2 wks later and there's an 8 wk wait. Apparently there's only 1 cardiac scanner and they only do one clinic a week. So I can look forward to my scan in August!
Hope you get the appointment soon, if your anything like me everything would have settled down by the time you see a Rheumatologist!
Beth x
Here at NRAS we feel we should add to the discussion in that the time frames suggested by Tilda's GP for the onset of any damage are not the most up to date. The NICE guidance, the BSR guidelines and the Standards of Care for arthritis all suggest that the risk of damage to the joints can be seen sooner and they recommend starting disease modifying treatment as soon as a diagnosis of any inflammatory arthritis is made.Nicky-nras
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Dis-appointment
My Journey
Referral done.
Rheumatology appointment ( first referral )
