Hi All, I'm Sue, I'm 52 and I have just been told I have RA. My first rheumatology appointment didn't go to well, the doctor didn't seem to believe me, looked down her nose at me and just brushed me off. She told me I May have RA and I would need another blood test, a scan and then gave a handful of leaflets about drugs that didn't get. They gave me a scan date for September and were no help whatsoever.
A couple of weeks ago my husband rang the hospital to ask if the scan could be bought forward as I was in so much pain I couldn't put my feet on the floor. He ask about the blood test, that hadn't even been looked at but they would sort somethingout. Last week I had a letter saying that my blood test was 'strongly positive' and my scan has been brought forward to June 4th.
I had to see my GP in the end who put me on Naproxen which has helped but I am just annoyed with the attitude of the Doctor just because nothing was swollen or hurting too bad.
Sorry for ranting but I just wanted to know if this was usual for a first visit.
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Suey4
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If it is normal it shouldn’t be. I was diagnosed in Portugal and everything moved quickly after that. It’s shocking you were left in so much pain and not with an appointment till September. Thank goodness you now have an earlier one.
Luckily it's not usual - but sadly not unheard of. Some people have had real difficulty getting believed if no obvious swelling, and don't have strong evidence in the blood tests. However the letter suggests you are sero-positive, which makes a diagnosis much easier.
Good that the scan has been brought forward, but the important thing is your next appointment with the rheumy? Have you got a date?
It may well not be same doctor, but you could take your husband with you if you feel apprehensive.
Unfortunately I've had similar experiences, don't give up though and always take someone with you to all appointments. The best piece of advice I was ever given was to write down the top 3/4 concerns you have about your condition and give this to each Dr you see...rheumatologist, GP etc
I split my concerns into top physical e.g. hands hot and painful and psychological e.g. sleep becoming more disturbed. Hand the paper eith your written concerns to the condultant, ask for it to be entered into your notes. Be confident.
My relationship has improved greatly with my rheumatologist and I feel listened to since doing this.
Things will improve but you will need to be persistent with the medical profession. Don't be bullied by them.
they bully because our (USA Drs) are forced into doing it. The government only knows two speeds, full on, or screeching stop. You can see that in the immigration mess we have. Its showing in the drug war using Opiates as the villian. But thats how our govt works, create a crisis, then throw the kitchen sink at it all at once to solve it (usually never gets fixed). Consequences be damned.
No, this should not be happening but, unfortunately, does sometimes. The lack of rheumatologists in the NHS and the pressures of an overstretched system can and do cause long waiting times and maybe the doctor was having a bad day. We're all human after all. Now that you have a 'strongly positive' test result you should be seen a lot quicker, a treatment plan put in place and drug therapy can begin. It's only 3 days to your scan appointment so things are starting to happen for you. I do hope your GP also prescribed a stomach protector to go with the Naproxen as it can be a bit harsh on the tummy. This is probably the worst time in your RD (or RA if you prefer) experience. The feeling so awful, the fears for the future and the not knowing is horrible. Please let us know how you are doing. Huge hugs
Sorry to hear about your trouble Sue. My best advice is to keep a daily journal recording stiffness levels, pain levels, which joints and how it affects your mood and sleep. You then have something to put under her nose when she looks down along it! It helped me to get the severity of my situation across after diagnosis. Good luck and keep us posted.
Welcome to the forum and may I say that you have come to the right place.
Here and NRAS where you will get some wonderful helpful information.
The first days, weeks, months of getting diagnosed, starting on first line of treatment and feeling some relief or progress are the worst. This will feel like an uphill struggle for you and your family and unfortunately we all have to go through it.
Some of it is the nature of the disease and some of it is the system.
I give the same advice to you as I learnt from personal experience and that I give to everyone that starts on this journey and it is to become your own expert in your form of disease/condition. Be your own advocate. Learn about the different tests, what they are for and what they mean. Keep a record of your bloods ( you can do this via some patient online access at some GP’s) I have blood taken every 8 weeks and everything is plotted on a graph its amazing to see the affect my treatment has on my liver, my white blood cells my inflammatory levels etc.
The other thing you need to know Sue is that there is no instant fix it takes time to find the right regimen that suits you.
I wish you luck going forwards and please do come back here for help if you need it.
Mx
Hi Sue, sorry to hear that you’ve had a disappointing result from your first appt. I’m from OZ, and can assure you that your experience is totally normal. I agree 100% with the answers you’ve received above. Sad but true, document everything, because RA can be so random, and every individual has their own experience. This is a great site for research. Wishing you all the best for the future, do drop in and tell us how you’re goimg, cheers Deb
So sad to hear the same thing is happening around the world. I know its not RD related, but relevant nonetheless, my aunt who works for a GP practice told me that none of the 5 GPs she works for 'believe' that ME exists. One joked it's not called 'me' for nothing.
An absolute disgrace that people with ME have to put their trust in people with such views and that their taxes pay their salary.
The unit I’m under wanted all the tests done before I attended my first appointment.
Sympathise, mine aren't great: i get the leaflet treatment, blank stare to questions and had to find out everything myself, hang on in there n hope it gets better 😊
In a few words, sadly your experience is not too unusual.
Unfortunately you have to be very proactive at the beginning of the RD Journey.
It's good you have a supportive husband to move things along.
I too was dianosed in my 50's & my GP at the time told me I must expect aches & pains "at my age" & rushed me out the door win the advice to take an aspirin when it hurt. Luckily I had a doctor friend who referred me to a professor of Rheumatology & I'm still here to tell the tale.
Hope all goes well om 4 June....hope you see a different rheumatologist !
I had this the first time I saw rheumy. Felt like she thought I was faking it despite my high ESR and CRP. Literally came home and cried. She ordered X-rays and the next time I went it was like she had a personality change. Completely different person and has been really nice ever since. I have put it down to a bad day. Having said that even a bad day shouldn’t be taken out on their patients. Hopefully they will be nicer to you next time. Good luck xx
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