Oh.. i just wish your Rheumatology Clinic could read this and hear it without having to resort to defending their position.. Whether your diagnosis is potentially clear or not, surely someone could see how difficult it is for you. Could someone on this site, or NRAS recommend a clinic in your area where they at least understand how difficult it all is? understanding isn't as good as 'an answer' maybe, but theres something healing about it. My heart goes out to you.

I had a bad app on mon after waiting months my consultants understody took it over was adamant I was on some drugs I'd never had after abt 10 mins trying to convince her abt another tab she left the room to return with the main man himself and ha to admit my notes had got muddled with whoever by this time I was so upset thought I'd had bad fog dementia and memory loss shaking and then fob off with some tabs no explanation had bloods done as I was leaving saw the man off down corridor car keys and case as it was 5 o'clock my app was 3 and I'm still no wiser ?????? I'm so angry tried to ring Rumi line no answer as yet totally p....d off !!!!!

I so feel for you cliffhopper

I went through pretty much the same thing, and was in agonising pain. I was walking around (or should I say hobbling) with bilateral achilles tendinitis, and knees so swollen they looked ridiculous.

How about contacting NRAS for advice. Can't stand to think of you being in pain.

cliffhopper, I would be tempted to send your letter to your rheumatologist.

We are told to trust our doctors, because they know best and we should trust them. All too often however we as patients are treated in a manner that puts us in a state of helplessness and dispair. So where is there room for trust? Trust needs to be earned and this is the job for the doctor, not the patient. NRAS would really help RA patiens by doing a survey on negative patient doctor experiences. Your experience has been shared by so many, me included. Understand you frustration so well.😡.Simba

I agree totally cliffhopper. You pin so much hope on the consultant understanding what you're going through. You know your body and you know your symptoms.

I am still to be diagnosed and have only had one appointment.

I went with hope and came out completely dejected. The whole process is too slow. I appreciate its sometimes difficult to diagnose and not everyone ticks all the boxes, but if the consultant thinks there is a chance of RA all the relevant tests should be done at the same time and quickly. This may allow help within the window of opportunity to halt the progression and the save the NHS money in the long run.

I hope you get the you need soon.

The help you need soon.

My heart breaks for you. I hate to disappoint you further but It really does not improve all that much even with a seropositive diagnosis. It mostly is an invisible disorder. It also looks very different from one individual to the next. What we share is an understanding of the incredible frustration we face.

I sincerely hope this changes for you quickly. Hang in there, changes are happening daily. Better diagnostic tools and hopefully a better understanding in chronic pain and chronic illness. Better days ahead, we hope .

I’m so sorry for your experience! Are you able to get another opinion?

This may not help but I can sympathize. It took over 10 years of spine/ortho/pain docs, clinics, etc for SOMEONE to think I needed a rheumatologist.

Please be your own advocate. And ask for help. If you go to the top at the hospital they are forced to deal with you. I know. I work at one. ❤️❤️❤️❤️

I suppose as frustrating as it is there really is not definative diagnosis sometimes. Your chap though sounds really not very nice. Not that nice is always good but it can be helpful in putting a patient at ease. I think if `i were you I'd change hospital, I'd not bother asking to see someone but start again somewhere else, if you can afford it a half hour with a private RA consultant might be a good ideaa. Not because they might be better at diagnosis but they will have more time to listen. Its not making an excuase for your doctor but around here they are so pushed to see everyone its such silly and its the bosses wo are to blame not the hard pushed doctor or nurse, I'm also allergic to Ibrufen so take Zapain it the pain is bad but to be honest that is a very rare occassion now. Even though the RA is getttng worse. My experiance is so different from yours I wonder if there is an element of ppost code lottery going on. I wish you well and don't give up, but get heard but perhaps not by this doctor anymore.

Aww how sad to read x

Your post made me feel very sad and extremely frustrated for you. I believe this happens to quite a few people with RA and the associated diseases, from what I have read in another group. The only thing I can think of to suggest is to ask your GP to refer you to a different hospital rheumy department, even if it means traveling a bit further, and get a second opinion. Yours sounds like he keeps his head in the sand. I wish you better luck, a proper diagnosis and successful treatment in the future.

I’m really sorry you’ve had to experience this. I would send your letter to the consultant either directly or via PALS. It’s very powerful. I work in the NHS and have pulled staff up for their attitude and they’ve not even realised they are doing it. Not an excuse I know. I’d also go back to your GP and ask to be referred to another consultant. Hope you get sorted soon.

I agree with Medway Lady that it’s no use when a doctor has made up their minds - they can’t open them again so it’s time to move on.

I’ve had four rheumatologists, having relocated three times over the past 3 years. The first had a reasonably open mind with me - mainly because he was a decent man and my inflammation markers were sufficiently high.

When I presented with swollen knuckles it was easy enough for him to diagnose seronegative RA and he stuck by that purely on the basis that my negative antibodies didn’t suggest any alternatives. He happily referred me to a colleague for a second opinion on Lupus when I asked. But this chap also said RA was the culprit. Which is better than being diagnosed with Fibro - a diagbosis of the non believing doctor I think - but I didn’t feel right to me.

Second rheum seemed stunningly thorough but also appareared to have a determination to undermine my first rheum - felt like I was caught in a school boy game? He said there was no such thing as seronegative Lupus and all my autoantibodies were negative - so I must have had seronegative RA after all but for now, as it had disappeared, he would call it “polyarthritis unspecified”.

In vain did I point out that I had still been on a six month course of Prednisolone when he ran my bloods.

Then I went on a wild goose chase trying to work out how my inflammation could be so high again, once off steroids, if I only had Hashimoto’s. I saw an endo privately - a delightful gent - who told me that he couldn’t help me much as I clearly had a rheumatic disease as well as Hashis - but he did say one thing: that if you come across a consultant who tells you that there is no such thing as seronegative Lupus, that only private London clinics diagnose such things for extra research funding, that you can’t have PsA with no sigh of Psoriasis or such stuff - move on because this doctor is a rigid thinker obsessed with guidelines.

He said he had made guidelines once himself and now they had been adopted by the big guns and he had found himself hoisted by his own writing as it were - a deep source of regret. Guidelines are only made for approximation and those who stick to them rigidly are to be avoided.

Finally I was rediagnosed in a third hospital by a third rheum who then retired. By bloods and symptoms pointed by this time to Lupus or Sjögren’s and lip biopsy confirmed the latter 100%.

I am now under rheumy no. 4. For me she’s brilliant but for others she may not be. I have blood that supports my autoimmunity, I have a lip biopsy that suppprts Sjögren’s and a history of RA which Sjögren’s can mimic. I think I also have small vessel Vasculitis and possibly mild PsA and because she chooses to believe me, she doesn’t rule this out or give me the “just Fibro” look. But I know of a few others she has done this to so I’m just very lucky that I have passed muster for her due to bloods and biopsy results. She also knows I can write a sharp letter and won’t be taken for a fool because I’ve copied her into my letter to a colleague and to one of her registrars who messed up badly with me. I think this has earned me her respect.

Finally I’ve had 3 neurologists and all have come up with the word functional about my neuro symptoms, despite knowing I have RA/ Sjögren’s. When this happens I write them a polite but stern letter and move on. No.3 is currently under review for me! Please stick to your guns, trust your instincts and try to seek a second opinion in a new hospital if you can.

I know how devastating a bad consultation can be. Some doctors just have closed minds and are guideline obsessed and yours sounds like one such. You need a new doctor who chooses to believe their patients.

This could have been me yesterday! I’ve tried all the dmards and they make me feel dreadful, very depressed and anxious, not sure why, I wish they didn’t.

I was made to feel like a neurotic nuisance, she more or less said that if I can’t tolerate these meds there’s nothing more she can do for me. Feeling lost and a bit cross now 🙄

Reading this made me feel so sad and angry for you. As others have suggested, perhaps your letter should be sent to the person in charge of the hospital, along with a request to be reassigned to another Rheumatologist and given an urgent appointment. Alternatively, if you have a sympathetic GP, show this to them, and ask them to refer you to another rheumy, even at another hospital, if that is feasible for you. This sort of shoddy treatment is unacceptable. I really hope you are able to find a way through this.

Hi, so sorry to read your comments, I think we all hope our next appointment will be the one that the doctor will actually listen to us and come up with a treatment plan that actually helps us. I know I love in Spain and no doubt things are very different now in the NHS than when I left. (I too was an SRN in a previous life before becoming ill). I had such a dreadfully rheumatologist who actually prescribed me methotrexate injections every day of the week. I contacted a lupus association here in Malaga who put in a complaint to the head of rheumatology for the whole of Andalucia and they pulled strings and changed me to a different health authority and I now have a very nice rheumatologist who I am due to see next month. My first appointment lasted an hour and a half. Is there a lupus association in the UK you could contact to help you or ask your GP for a second opinion. Good luck.

P.S. my original rheumatologist still is practicing as I have been sent appointments but have been told to put them in the bin!

As a doctor, who has had Sjogrens with RA for well over 30 years and seen a number of rheumatologists over these years, I can only apologise for your consultant and suggest you try to see a different one. It should be pointed out that doctors are only human and working in the NHS as it is nowadays must be soul destroying. There are many patients who come in with many symptoms, in a few cases imagined, and the NHS managers only allow 10 minutes per patient (one consultant I saw was very angry that some manager had instructed him that he could only see me once a year and not his recommended 6 monthly) So there are many excuses for how you were treated, but whilst perhaps understandable, none are acceptable. I am so grateful that I am now long retired!

I can relate on so many levels! I went to my GP for my feet turning purple/red, she dx me with Raynauds and gave me an rx. Within 3 days I woke up with swollen sore hands, chalked it up to salty food the night before...but then after 5 mornings of swollen, achy, stiff hands it started in both knees so i stopped taking the Raynauds rx thinking it had to be that...a week later, same symptoms so I went in for labs. All normal. She referred me to Rheumatology. Worse experience of my life. I didn't know he would run labs again so I drank a smoothie on my way.. he did the Fibro trigger point test but didn't tell me that's what he was doing (I know because I'm a Sr. Disability Specialist), I failed that test. He asked about joint pain and if it lasted all day and I said yes because at the beginning it was worse in the am but they still hurt all day...his assistant called me a wk later and said I was probably diabetic because of high glucose in urine. I literally just had fasted labs the month prior. I checked my chart and it said fibro. I was immediately set off as i knew I failed the fibro "test". Then another rheumy who was ignorant so I did my research and found a Rheumy who said "I dont care what labs say, i go based off how you tell me you feel" put me on prednisone and plaquenil, I'm on month 2 and just tapared off steroids to see if the plaquenil was working...its not so I'm back on steroids and just took the vectra DA test after I talked him into ordering the kits. Hang in there.

Sadly a very similar experience.

You NAILED IT! I had a very similar experience today, and every day I have an appointment with ANY/EVERY "doctor."

Awww poor you....I can relate so much with this. I had a similar experience many years ago, when my brilliant GP sent me up to the local hospital. The Rheumatologist was a real pig, only going by the textbook & not me as an individual.... & like you I went home in tears.

Not sure if you’re able to do this now but, with my GP’s help, I was able to change hospitals & see a lovely Rheumatologist in the hospital in the next town...what a difference!!

It’s so important (for your mind & body) to have a good relationship with your Rheumatologist.

Don’t give up & just remind him that you’re the patient & you happen to know your body better than he does! (I’d say this now, but I didn’t have the nerve then!) 😉

Good luck. xx

This must be so frustrating for you, it makes me thankful for the one I have and how fab he appears to be. Is there any way you could ask for a different doctor ? Or make a complaint about both the Doc, and the nurse ? How on earth does she know what you are going through and what stressors you might have going on in your life ? So many people are too quick to judge without knowing your whole situation.

If you have any skin rashes etc take photos and or ask to see a dematologist. That was my breakthrough to a better rheumy diagnosis and treatment. I had skin issues and rashes I did not even know were psoriaisis of skin . xx