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Completely devastated after second opinion - now the suffering will never end

Diagnosed with anti-ccp positive RA last September. Consultant said swelling in fingers, elbows, wrists, ankles and knees hot to touch. Triple therapy started. A year later and unable to tolerate dmards my GP asked for a second opinion in Bristol so I could get some better treatment.

Saw a 20 something registrar this morning. He said I do not have RA. A positive anti-ccp means nothing, a family history means nothing. I was just told I had something last year and I've made up the symptoms. There is no evidence of swelling and he could see "through my jeans" that my knees were fine. The tender joints, stiffness and tiredness could all be explained by fibromyalgia. There was no swelling in my fingers but fibromyalgia is a psychological illness and it's known people with it have body dismorphia and see things that aren't there. I asked about not being able to get my rings on and he said. It wasn't inflammation I was just knocking on a bit (I'm 47). I needed to come off all drugs and be discharged from rheumatology as I don't have any problem. Apparently any kind of positive anti-ccp means nothing. I am manufacturing in my head my symptoms because I've been told I have RA. He could not explain why the other consultant had thought I had clear active disease.

This has played straight in to the hands of my original hospital who were angry about the second opinion and did not want to treat me with biologics as I didn't meet the funding.

I'm in terrible pain with tender joints and I know my knees and hands are swollen because I can't get things on.

Apparently my allergic reaction to dmards is also a classic sign of fibromyalgia and the fact the steroids worked is irrelevant as it's psychological.

My other half who was with me wouldn't speak to me for an hour but finally said I could stop malingering and get back to work. My mum put the phone down on me. I'm just completely bewildered

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Omg my heart breaks for you. I have no advice unfortunately being very new to RA myself. But hang on in there and I'm sure others on here will have something to offer.

Thinking of you and sending hugs .

Sharon 🌸

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I'm sorry to hear this. It's the last thing you want.

I don't have any advice for you maybe someone on this forum may have some advice to offer.

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Hi

I cannot imagine how you must be feeling. What a desperately frightening place to be left !

I don't have any advice that may be of use to you, sorry. But I do know what I'd be doing if I found myself in such a place.

I would return to see gp who initially referred me to rheumy and I'd ask to be re revered. I would also request copy of referrals, bloods etc and I would make a case via patients charter/ complaint.

Not only would I be unhappy and concerned but I'd also be dammed unhappy thAt I'd been treated with seriously heavy meds fir a year in the basis of alleged misconduct diagnosis ?

Apologies, that may seem like a ramble but I feel

So bloody angry on your behalf!!

I so hope you get something to help and I'm sure that someone will be along to offer you more appropriate and helpful advice .

Marie

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I'm so disgusted with the way u was treated u need referring to a diff dr how dare he. I was told to get rid of my stick and walk 10.000 steps I'd be fine. I'm in agony I have ostio arthritus bad bad knees ankles giview g way but hae a rheumatologist who told me I have fibromyalgia but I can't swollow capsules or tablets unless they can be crushes is I first some reason developed dyspagia my throat closed up 19 wks later I'm eating but not salads fruit and meat except sheps pie mashed and cottage pie I liquidise most iv been told my swallowing is fine my neck and throat still hurts and iv bin signed off from e n t as they can't find anything after having a swelling in my throat and neck and tests after test the swelling gone down lost over 2 stone I'm fed up with waiting to see Dr about a new knee I want to be refered to London but they won't x if ur face fits ur ok .but they have helped me with my meds x

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Hi Margaret, I have a similar thing to you. Diagnosed with osteoarthritis in my hands and spine. I also had a positive anti cop. And although I have inflammation in my tendons around my hips. My rheumatologist still maintains I don't have rheumatoid arthritis. I too developed dyspepsia. It's lasted for 4 months now's. My rheumy said it was a ' virus' but I'm convinced it's connected to the arthritis. I've had test with the ENT people and all they could find was a hiatus hernia! It's all so frustrating!

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Apologies - typos!

Should read " on the basis of alleged mis diagnosis !"

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How massively frustrating and upsetting for you. I agree with what Marie said, go back to your GP ASAP. I really hope that you get some answers and relief soon. Take care. x

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Hi

Very sorry to hear of all this hassle.

As another has said - ask for access to your records, copy and seek GP support for referral to another hospital.

Lodge complaint against Rheumy. Best wishes

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Oh no! I'd want to be knowing why, on a second opinion appointment you were appointed a Registrar. As it is we've to see them far too often for my liking. I know they've to learn to qualify but in this sort of situation it needs a fully qualified & experienced Rheumy. Sorry but I fear you've been assigned a Registrar for a reason. Remember even if not in the same department or hospital if under the same regional health authority they all know one another & I fear your treatment from your current Rheumy would make me suspicious of this.

In your position I'd do as Marie says, speak with your GP first, see what he/she suggests. If you're not content with what his/her advice/recommendation is as to where you go from here garner as much relevant evidence & information as you can (the more the better) & form a case of wrongful treatment. You can do this a number of ways, this from the CAB may be a helpful start (the option is for England, if in another country choose from the options in the drop down box) citizensadvice.org.uk/healt...

So bloody annoyed on your behalf on so many levels.

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Wat??? Who did you go and see - Donald Duck????

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You mean a quack?!

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Thanks everyone. I can't quite square the oh you've got aggressive RA with you don't have it. He says he thinks the pain in my knees (can't bend them and pain under knee caps constantly are mechanical and perhaps down to my back and it's all coincidence that I've developed all of these symptoms none of which he thinks are consistent with RA

Morning stiffness

Pain in finger joints I can't pick anything up without wincing but apparently that's just me being ultra reactive to normal joints. Tender wrists but no that's not symptomatic. Swollen right ankle, stiff ankle that won't bend. Left thumb that won't bend. Etc

They were absolutely adamant in September I had obvious and active disease then in April after I couldn't take dmards and didn't qualify for biologics the consultant said they thought I had RA and fibromyalgia (my GP thought this was a get out for not being able to treat me) and now on a very brief exam fully clothed this registrar says even though my bloods are positive I don't have it

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Hi

What is positive is your gp seems to support your questioning of such ridiculous assessment by rheumatology and as such will be able to guide and support you in taking this further and hopefully reaching an appropriate and positive outcome.

However, it remains beyond belief that you are being put through this - absolutely unnecessary and detrimental to your physical and emotional well being.

Whichever way this goes, I pray you get the correct diagnosis and a swift treatment plan and you should absolutely report the registrar you saw for his incompetent and disrespectful treatment of you.

Let us know how you get on. Thinking if you and wishing you well.

Marie

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I think it may be ostio arthritus that's what I'm. told is why I'm in pain with my knees iv hd them cleaned out 3 times the last has bin the worse I can't understand your I keep getting turned fown for a new knee I'm told I need .now my ankles are swelling so bad they give way I have ankle braces for them .I keep thinking of changing Dr's but better the devil u no .iv been very depressed I cry sll the time I'm on antidepressants but in liquid form .I was put on a diff acidr med iv bin so bad and yest saw the side effect .bad tummy ache depression bad head aches aXiety feeling sick. iv had all this .my head is bad all the time I take oxecodine liquid form iv had patches made me so I'll I hope u find dome one to help you. write to a rheumatologist dr adked for them to see you if you can get refired I'd want a second opinion this man needs reporting I would have got up and walked out I would not sit and listen to what he ssid was he a fully trained dr .I'd write and complain about the way ypu was treated

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Wait, WHAT?

He said a positive anti-CCP means nothing? While it's true that anti CCP can show up years before the onset of RA and that some folks with positive anti CCP never go on to develop full blown RA if you have clinical symptoms plus a positive anti CCP it pretty much clinches an RA diagnosis.

Here's the thing. Some doctors are a little biased as to what constitutes clinical symptoms for RA. For instance some doctors won't count feet while it's clear for some people RA began in their feet. (I'm one of those)

Morning stiffness in hands lasting more that 30 minutes for at least 6 weeks must be present for many doctors.

Visible inflammation also must be present for many doctors. I never really had discernible inflammation. I could see it and knew it was swollen but as it wasn't grossly obvious it was often dismissed.

Another very common belief that doctors have is that RA starts in the smaller joints of the hands and feet and only later in the disease process will it move to the larger joints of knees, hips etc.

While I can appreciate the difficulty of diagnosing RA and absolutely believe that some people are misdiagnosed as having RA only to later find out it's evolved into a different inflammatory arthritis or something entirely different if someone presents with a high anti CCP and clinical symptoms then at the very least further investigation needs to be done.

Anti CCP is pretty darn specific to RA and rarely shows up in other diseases ( but certainly can) To date it is the one test that must be taken seriously and further investigation or being watched closely is the only correct thing to do. Surely not be brushed off as psychosomatic. Do you remember how high your anti CCP is?

Here's what I would do if I was in your shoes. Find out everything you can about your specific symptoms, gather all of your lab results and go armed with clear, specific questions trying as hard as you can to keep emotions out of it and ask if it's possible to see a doctor that thinks outside the box.

The ladies above have given you good advice on how to navigate NHS I only hope it gets you to a better solution and that you're soon on the road to feeling and doing much better.

All the best.

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Hi Lucy thanks for that. Mine is much in my toes than my hands. He dismissed me because he couldn't see obvious information except I know my hands and feet and knees are swollen. He said people with fibromyalgia have body dismorphia and see what they want to see. But the first thing the previous consultant said was your hands are swollen

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Sorry to hear this. You mentioned that you have morning stiffness and wince in pain when you pick something up but you feel that it's worse in your toes than your hands?

It sounds to me that your hands aren't doing too well. How worse can it be in your toes?

Have you had any imaging done on any of your joints? (Ultrasound or MRI)

You didn't mention how high your anti CCP was?

I really hope it all gets sorted out for you soon. Be well.

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I'm gobsmacked at the attitude of your Registrar? He thinks he has xray vision as he can see your knees through you jeans? Unless he is related to Superman, he is lying.

I'm no expert on Fibromyalgia, but Fibro is a rheumatological disease. Maybe this Registrar should hang up his stethoscope & should sell beer for a living?

Please keep searching for a 3rd & 4th opinion. You deserve to be treated properly. As for your better half, his actions could be out of bewilderment too. I'm so sorry you are going through this.

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To be honest with you, I was diagnosed with seropositive RA in 2014. In 2016 it changed to seronegative Ra. Then in 2017 it was changed to "unknown inflamatory arthritis" .

The best advice I could give you is what HelixHelix gave me. "Inflammatory arthritis is a citrus fruit. They once thought it was an orange, then they thought it a grapefruit, now they believe it is a lime" So, you & me seem to have the "lime" form of inflammitory arthritis.

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Ha Suzanne indeed!

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This is beyond distressing. What a lousy dr. Can you speak to PALS at hospital? Try to go to a consultant who uses special ultrasound machine to look in joints - dr young min at Portsmouth uses this - I had been told by 2 drs they weren't sure about my symptoms so more wait and see - saw dr YM the same day as 2nd one and he looked for 2 mins with machine and confirmed RA. He is not my dr, I was fortunate to be sent into his room by junior dr for second opinion . Good luck, also call NRAS as they helped me get diagnosed

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I cannot believe what I'm reading!!!! Please do see your GP, at least they will be able to help you a bit with steroids while you get things sorted out.

I have been considering going for a second opinion as I am not getting any continuity of care, with every different locum registrar telling me something different and some not recognising symptoms recognised by others and still not being able to walk. This has completely put me off!

Hope you get sorted soon, best wishes.

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Yes, it has confirmed my thoughts that it is unwise to rock the boat.

I managed yesterday to pin down an answer from the person I saw. She was looking at my xrays of hips and blabbing on about osteo. I asked her out right if she was trying to tell me that the bilateral Achilles tendonitis, bilateral hip erosion, bilateral knee problems, bilateral feet issues (plus nail deformity) and bilateral rotator cuff tears where all down to osteo. `isnt that rather unusual?` I asked. It was only then, she said I also had inflammatory arthritis.

Each time I go to rheumatologist I'm given hogwash. I do wonder how some people manage to get excellent treatment, whilst others do not? I'm always polite, try not to make a fuss.

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I think it's depends on the hospital you attend for Rheumatology. It sounds like the big hospitals are better. Mine has always been awful. Every doctor I see says a different thing.

I have a few similar issues, all bilateral - achillies tendonitis, plantar fasciitis, bursitis in both feet, tennis elbow. Despite being started on Methotrexate for by a consultant who told me these were symptoms of RA (hands, wrists etc too) I was told by a registrar at my last appointment they were mechanical problems because my ESR was low!

I've pushed for some diagnostic tests, X-rays, ultrasound of feet and podiatry. Trouble is, the results of all these need to be put together by the Rheumatologist and assessed and that's not happening.

No one is telling me whether my symptoms are Rheumatoid related for sure, I feel like I'm going round in circles and getting nowhere. Meanwhile it's been a year since I could walk. They have told me at podiatry today that it's unlikely I'll ever walk properly again (and I still don't qualify for tailor made insoles!). I'm 51. Feel very let down.

Hope you have some luck via your GP.

Best wishes

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Oh dear, I feel do bad for you. I'm afraid I've become rather disillusioned with the whole process myself. I'm sero negative, with very clear joint damage.

I have a sneaking suspicion that if I don't comply with taking leflunomide (due to severe gut issues) that I'm going to be dumped from a great height!

I've already had fibro tacked on to diagnosis ( I don't have it!). I'd had an appalling reaction to sulfasalazine! I was told yesterday that I was running out of options. I've had two Dmards...can't take methotrexate.

I've come to the conclusion that this is all about money. Unless you fit the classic diagnosis you're stuffed. Call me synical if you like, but since I've already got a diagnosis of a severe mental health issue, it's going to be easy to dismiss all. It's happened many times before.

I have personally decided to keep my mouth shut and continue taking the leflunomide, and see what happens. I am too scared of being dumped from rheumy, and left in agony. But that's my story, and my choice.

You could contact the folks on this site, or PALs? Ask for a referal elsewhere? I don't have the energy for all. I'm sorry to hear that your husband is being less than helpful. Folks just have no concept of the pain and frustration.

Wish I could be of more help.

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Oh that sounds familiar. They couldn't do enough for me at first. Everything was so clearly the disease. Then I failed on methotrexate due to repeated infections, I am highly allergic to sulfazalizine and hydroxycolquinine and passed out on the leflunomide. It was failing on this fourth dmard that changed things. Suddenly I was a problem, why had I called them again, no actually they didn't think it was RA anymore despite the positive anti-ccp. This was right after I was told my treatment options were limited as I didn't qualify for biologics. I think this is all about money. My GP thinks so too. Diagnose it as fibromyalgia and it's the GP's problem not theirs

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Do you have xrays? Mine clearly show an inflammatory process going on. I'm guessing it would be hard to dismiss an xray?

I wish you well, and so empathise with your dilemma.

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Just devastated for you, they are all the signs of RA you are so young I don't feel my GP treats me the same as a young lady but my Rheumatologist is fantastic, very so I can not be any help but just keep on at your GP try and get an appointment in the late afternoon when your swelling is worse kindest regards Elizabeth (71)

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I'm absolutely appalled at how you were treated (and fibromyalgia is NOT a psychological illness, it's a well documented auto-immune condition) and I'm sorry about the reaction of your other half and Mum. Your GP clearly thinks there's a problem or wouldn't have referred you for a second opinion - I would get an appointment back at the surgery asap. Keep fighting, V x

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???? I can't believe how badly you have been treated. Complain!

And have a serious conversation with your family. They should be outraged for you, not with you x

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Couldn't agree more, you need help and support through all this, it's horrible being in pain as it is without being fobbed off like this. I cannot believe some of the posts on here and what people are going through, I am very fortunate in having two wonderful rheumy nurses and fantastic treatment at my local hospital. Now on biologics after not tolerating dmards. I also have fibro and believe me sometimes that is worse than the ra pain. Wish I could help you. Please don't despair and keep on and definitely complain formally.

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Poor you. This must be very distressing for you. You have had some good practical advice.

Do you have a close friend who can support you ? And/or, you could speak to NRAS. As well as their helpline, they have a mentoring scheme .

Jora

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I have had exactly the same experience- was told with positive CCP and RA results plus physical symptoms - assessed by a professor - that is was RA. Was on research team for a year. Now different consultant says its osteoarthritis- and am on large dosage of hydroxychloroquine.....

I sympathise very much with you - unless you have had the pain and flares, its easy to just "pass it off". Hope you get some relief soon.

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I am only now reading this, so you my have moved forward. But I strongly recommend that you contact your Rheumatology nurse +/or your GP & firmly though simply request an interview "as you are totally confused & upset about conflicting professionals' opinions and seriously need clarification." In your own interests, you need to have a confident & CALM determination to build good relationship(s) and communication. When you have genuinely & thoroughly explored this road, then - just as calmly & determinedly - seek redress via complaint or whatever. Good luck.

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Have you researched abit about RA and also first thing I would do is book an appointment with a phsychiatrist. Why you may ask, they can determine if it's psychosomatic or whether you have a physical health problem which if I'm honest I think you do.

Don't give up the fight, nobody knows your body like you do so keep fighting.

Believe in yourself and those closest to you will eventually follow. Book an appointment with a phsychiatrist that should be first on your agenda.

Why have I come to these conclusions? Because I was where you were at until this morning when respected phsychiatrist said I am not psychosomatic and I am also not having dissociation problems. This morning I cried for nearly 30 minutes, I couldn't believe what I was hearing and she's also going to write to all the specialist involved with me. I will be getting my own referral to a hospital I choose as I have cause. This could be you if you fight and believe in yourself. Any extra help you need, private message me. I will be there for you as I've been there and not just the specialists but my husband was the same as well 🤗

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