Didn’t want to wait for nhs so went private. Had examination and consultant said no sign of RA. My readings taken at doctors were 37, very low, he said it would be in the hundreds if RA was present.
Annoyed with my doctor who rang me 8 30 am and said’ you’ve got RA, I’m referring you to a specialist’. Even putting urgent on referral.
Anyway I’m so chuffed and feel very lucky but also humbled to have had contact with all you lovely people who were willing to offer advice and give up your time for me, thank you.
I wish you all good luck and hope for the future, I know you will keep smiling and not let this horrible thing win, life is to precious to give up.
If I win the lottery I’ll be back and we’ll party.
Thank you all.
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Wirtgen
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Hi Wirtgen.....I don’t want to upset you.....and it’s up to you of course, but I’m a belt & braces kind of girl...if I were you I’d keep on the waiting list for the NHS rheumatology appointment your GP has advised.....or at least speak to your GP & ask him why he felt so strongly he needed to refer you urgently. If you don’t want to confront him in person......write to him.
Seeing a doctor privately was a sensible move...but RA is a crafty old disease.. I’m sure keeping an eye on things & keeping that NHS check up will confirm all is OK.
You say the NHS appointment could be many months away, if you have no more symptoms in the meantime...you can always cancel.
Hi, that’s very good advice, didn’t want to deprive anyone on the list of being a bit quicker, but I’ll wait a few weeks or maybe o month or so. Bit annoying with the doctor but I’ll challenge him. We have an “ask my Gp” website so I’ll try that.
Don’t be upset W....we have to be proactive & cover all eventualities....every doctor gets it wrong sometimes....so belt & braces....& wait & see.
Really hope the rheumy was right ...but if not you would be the losing party...not him.
Sorry I don’t want to put a dampener on things and it may not be relevant to you. I was misdiagnosed about 5 /6 years before current diagnosis because my bloods only read 19 told no not RA . Left consultation so relieved. Fast forward 5 -6 years referred again bloods 12 told symptomatic swelling, hot stiff joints with pain and fatigue. Definitely RA but s- negative it doesn’t show up in bloods. I needed ultrasounds and xrays along side physical examinations.make sure all areas covered before accepting diagnosis with hind sight I wish I did.
Thanks, I’ll keep nhs appointment, you’re all so helpful, shame I can’t send a social distance hug down the line🌺
As J1707 says, bloods can be negative/normal with all types of inflammatory arthritis, including RA. It’s known as being seronegative: if you have symptoms, the reality is that normal bloods aren’t actually conclusive, and I would be wary of the private consultation you’ve had if they dismissed arthritis *purely* on the basis of bloods. I’m assuming the 37 was for your crp, and there are a number of people here for whom that (or lower) would be normal for them during acute disease activity, but the normal value is actually considered to be 3 or less. It might not be in the hundreds, but it is still significantly elevated. I don’t have RA, I have PsA, and in my own case - and it’s actually a differential diagnostic feature of PsA - all my bloods are completely within normal, including my crp, which is why it took me a decade to get a diagnosis after already having symptoms for a decade prior to that.
If you have signs and symptoms consistent with inflammatory arthritis, I would just be a little bit cautious about what you’ve been told. As per Agedcrone’s reply, why not hang on to the NHS referral a little bit longer and see how things go before making a decision to cancel it?
If it is your CRP markers then I've had two blood tests over the past couple of months with both showing my CRP to be 30+. My rheumatologist is not happy as under 5 is more the norm and he/she want me to increase the med I take to try and better control my RA.
I'm seropositive so no problem being diagnosed with RA.
Me too re being told no R.A. .. for nine months then my ESR went very high but all signs of RA were visible and medication could then begin. Originally it was thought I had a virus which was affecting my joints. I was told it could fizzle itself out. If only. Then each time I had red swollen joints they subsided by the time I got to see the rheumy. It was the overwhelming fatigue and weight loss and then an isotope bone scan which revealed “hot spots” of inflammation in the places I told them were troublesome which made my rheumy say R.A. but I need a rheumatoid blood result for giving you medication. My ESR went from normal to over 100 very quickly and then the RA showed positive in my blood. They didn’t test CRP in 1995 back then. Just ESR. RA can take time to fully materialise and especially in the inflammatory numbers.
Some excellent advice given re keep the NHS appointment. I saw a rheumy privately who eventually diagnosed me but then she said ... see me NHS as you’ll spend too much on the consultations you’ll need.
I don’t want you to have RA of course but better to be checked again by the NHS rheumy to be sure. Good luck. x
Hum, best as all the others say to go through the NHS. They will probably want to run more tests. All my blood markers are normal, except my neutrophil and ANA. I've never had a raised CRP. Initially diagnosed with inflammatory arthritis but over the course of a year I have developed other symptoms including photosensitivity,malar rash, sicca, some diffused hair loss. So glad that I am under rhuematology as they continually monitor and refer to other specialities such as dermatology. Autoimmune diseases can take up quite a while to manifest - best to wait for your NHS appointment. I can, however, understand your desire to speed things up - it's natural. I hope you don't have to wait long and I further hope that they just confirm what your private consultant told you.
When diagnosed my CRP had managed to get to 21! Luckily I had a rheumatologist who looked at me, and not the piece of paper. I now know that anything above 8 for me is abnormal.
So like others I would say don’t cancel that NHS appointment.
The consultant did examine my joints and said no form of swelling, he seemed quite thorough, he is actually the consultant at the hospital I’m waiting an appointment! Anyway definitely food for thought, seems like a minefield.
You good people are obviously at the sharp end having experienced RA first hand. I welcome The feedback and as said to all the forum you’re a brilliant bunch, thank you again.
If not arthritis then what do they suggest is causing your symptoms? Obviously if you don't have it that's great .... but I think I would be concerned with what it actually was ? Xx
Ditto above to all reply’s I was the same doctor said it could just be old age fluid on the knee etc 2 yrs this went on bloods were normal then bang the RD came hope you haven’t got it but you will sooner or later no if you have good luck best wishes stay safe everyone x
I had symptoms for many years but nothing significant showed in my blood tests only mildly raised inflammatory markers. Symptoms persisted & I was referred to hospital Rheumatologist but sent away as a time waster nothing wrong with me was his response. I was relieved but symptoms remained but began to get worse. My GP knowing something was wrong referred me twice more over the following 8 years but told again there was nothing wrong. I was so bad at this point my GP asked me to go privately which I did & was diagnosed with sero negative inflammatory arthritis. It took 10 years to get to this point but so much damage had been done by then. If there had been a different consultant then there may have been a different outcome so always good to have a second opinion.
I really hope he/she agrees with your not R.A. diagnosis. X
Hi, the reason I went to Gp was my feet felt numb around the toes, I was thinking diabetes, I have a lump on toe joint been there for years. No swelling anywhere So surprised to hear RA. Anyway the reading is the reading 32u/ml.
As said previous the consultant is the same guy at the nhs. I always thought the nhs would be better, they have a separate unit with specialist teams, fingers crossed, I’ll keep the appointment. All you folks are so helpful I think you should get a government grant.
The sun has got his hat on, hip hip hip hurray, Have a great day.
Did you ask what the reading 37 was about? Could have been ESR - an inflammatory marker. This is quite a common reading if you have a flare of RA, or any other inflammatory disease. Older people usually have a higher than "normal" ESR - even without disease. The CRP is also an inflammatory marker used now for RA (it wasn't when I was diagnosed) and considered more accurate. But most disease free patients don't have a positive CRP. RA under good control can be low. But 37 is high and something is causing it.
I endorse everything that has already been said about holding on to the NHS.
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