"My bloods are fine". "276 could be normal for anyone." (Normal levels 19 apparently!!!) (Strongly indicating rheumatoid arthritis said by 2 GPs and GP1 said somethings definitely going on)
Suggested mouth swab...for dry mouth. Didn't do it.
Didn't look at my photos or videos.
Just kept repeating "its not lupus." (1 reason i was refferred) and its "not rheumatoid arthritis"
Rash to be investigated by dermatologist. Could be rosacea. I asked what causes rosacea...."he said i don't know". Ive learnt off this site that rosacea can be caused by rheumatoid arthritis. (Looks like the lupus malar rash). He laughed at me when asking why i haven't seen a dermatologist yet.
To "tell hip consult dr B that i have no inflammatory condition and its mechanical"...even though he didn't look touch feel examine rotate move my hips or knees. Dr B....has been fab and knows my pain but the xrays lean away from osteo more towards rheum arthritis.
Dr B and prof R, both great hip specialists, said it appears to be a rheumatoid arthritis rather than osteoarthritis and therefore inflammatory/auto immune disease. Especially considering the anti ccp 276
He was a vile man that had no interest whatsoever. I was and am still a mess and angry and upset and am beside myself with rage disappointment and yet again MORE fobbing off. Just had enough. I hate my failing body!
Rant over....for now!
Thanks for listening you lovely bunch
Written by
Staywildmoonchild
To view profiles and participate in discussions please or .
So sorry, been there know how it feels when the specialist just ignores what you feel is important to tell him. He has no way of knowing what your illness is about just by looking at test results.😡
Hi, Can understand your frustration. I had a similar experience with the first Rheum. Very arrogant with a ' can't be bothered' attitude. I requested, via my GP to see another Rheum as my stress levels would have been through the roof with Dr HAPPY! It maybe good to seek a second opinion ( different rheum) on your symptoms so appropriate meds can be administered. As if it's not hard enough having health issues without the added stress from some ignorant people! Best of luck! Suzie X
That is horrible. Can you see someone else? He sounds as he didn't want to listen & had made his mind up before seeing you. I am about to see my Consultant for the first time on Tuesday. I hope they're not the psychic type like yours and listens. I hope you get to see someone else soon & get some help.
Please don't get upset I had 15 years of this I even convinced myself I was mentally ill . I had a fabulous doctor and without her looking outside the box I would have given up . I did eventually get a firm diagnosis from a new rheumatologist 10 years later I know that's not what you need to hear but so many of us are fobbed off . Chin up ask for a second opinion wish I had been braver but I wasn't as I was to ill to fight the system . Turned out to have zero negative RA , AS and now OA so you're not alone we're all here for you 💐🤗
My dad had it so just mentioned it to rheaumtoglist as I suffered from back pain and also uvittis in both eyes .I had put it down to doing nursing in the community in my days u had to lift patients so thought it was that lol .he done the gene test hlab27 was positive also MRI showed disc problems .and slight curvature in back lucky me lol .hope ur doing ok to take care Amy x
My dad remembered his nans brother had a bamboo back . Seems like I had the IBS the eczema the pelvic pain and back problems and I like you put it down to work pregnancy and being accident prone . I'm glad it's sorted now and the Humeria seems to work 🤗
That's good humera helps u it worked for 2years for me then stopped working .I'm of biologics now been on 7 over 14 year .all worked a while then stopped working starting on morphine patches .take care Amy x
Hope it continues to work for u it's a good drug I'm just at end of biologics been on 7 over 14 years so had a good run on them. Rheaumtoglist has put me on morphine patches for pain .take care nessa28 x hugs amy
I had a problem with throbbing pains in my fingers years ago. The then GP said don’t be silly only pregnant women get that.. was that a warning system gun as a he only way to get relief was to put them in hit water
Ask ur gp to refer u toe different rheaumtoglist. I had to do this quite a few years ago when mine said to my hubby she's bad what do u want me to do with her .like I wasn't in the room .hubby said that's ur job to advice me lol .gp referred me straight away when she heard this .else new rheaumy found I had rheaumtoid arthritis and anklossing spondlittis. Good luck amy
Ooh my!! What an unpleasant man! Mocking a patient is TOTALLY not OK. No wonder you are so angry with his lack of interest and diligence.. 2nd opinion time I guess, yet it seems you have been fighting 'something' for a long time so you have maybe been backwards and forwards in futile directions. I hope you pursue a different opinion and are treated with the respect you deserve.
he sounds completely out of touch and I to be wild about it too.
The best thing for me about a rheumatologist is when they feel my joints and can see what's going on and causing the pain. Then you can trust their expertise and start to try and have a dialogue.
I was told raised anti-ccp was the clearest indicator of RA by my rheumatologist. I think mine was around 40 but that was the decider. As I understand it there is nothing much else it can indicate.
Good luck with finding a better doctor.
Second opinion, maybe ask your gp to refer you to someone else
I have been seeking a diagnosis for a loooong time. Multiple health issues. Heart, joints, widespread pain, tremmors, myoclonic jerks, muscle twitches, bad gait, short term memory loss, short term memory loss, short term memory loss...hahaha couldnt resist sorry.
Ive seen neuros for possible MS. Yet again told "brain scans arent normal but not abnormal enough for a diagnosis....same for bloods, same for lumbar puncture.
Rheumy 15 yrs ago...diagnosed fybro
Rheumy 8 years ago...didnt think i had fybro but told me to use their support group. Again tests showed something but not enough. But at least he was thorough checking finger nails and joints..basic stuff i imagine.
He said my joints arent swollen today. He didnt even look! He squeezed...gently my around my knee and right wrist. He asked which joints swell and i showed him on my hands and he went to 1 knuckle, not one of the joints mentioned, and said "that's fine"
Grrrrrrrrr
I can see and feel why people feel so desperate and make desperate choices!
Ring Nuffield hospitals £50 to see a doctor as a private patient if you do not get anywhere but then blood work on top. Cannot complain here as my GP was and is excellent but like all he does make mistakes but on the ball
My GP thank goodness is awesome! He believes me and sees me on my worst days. Today just wasnt one of those...however i suspect one will come soon enough with the added stress. Thx for taking the time to reply which goes for you all
Depends where you live minty my Nuffield is £170 initial visit and £110 subsequent visit!! But saying that worth it. My gp was very efficient got me appointment within 4days to rheumy she did all the checks and started meds straight away. Took a while to find right ones but that's life! Good luck staywildmoomchild.
You got a ‘like’ for the short term, erm what was it again?
Sorry - must be really frustrating. I realise how ‘lucky’ I was with my Rheumatologist, he really is one of the good ones.
Do you mind me asking where abouts you are? (region rather than address 🙂). Maybe someone knows a good rheumy you could ask to be referred to by your excellent GP? My GP’s have always been willing to refer me to whoever I ask them to.
Have you had ultrasound or MRI done on any of the joints (which would usually be on the most problematic, but also most likely eg the hands)? If not, then ask the GP to be referred elsewhere and if you get nowhere try the complaints procedure. Imaging is a basic testing procedure for RA and if he has not done it, then he is negligent/incompetent.
With regard to the hands, a lot of people on here have trouble getting the rheumatologist to acknowledge their hands are swollen and stiff etc. I also had that attitude regarding my hands. On their side, you could say that they have not seen your hands before so don't know what would be swollen. I had previously had very slender piano fingers which were very nimble.
Do you have a loss of function in your hands eg, dropping things, unable to grip (turn a tap, button things, unable to write, no power in hands eg to pull a zip, cannot get dressed? All of that should have been considered. Quite frankly, if you have those symptoms, it could not be much else apart from RA. Do you have any nodules on your hands or wrists?
Absolutely. I suffer with terrible loss of function in my hands. This is why i was originally...some 8 yeats now, refferred for brain mri's for possible MS.
I dont have any nodules that i can see.
They are very stiff and weak and basic rubbish at functioning. My most painful joints are my elbows hips knees then wrists and fingers.
He told me to get back in touch with the hip consult and ask for a mri because its a mechanical issue not inflammatory/immune. The hip consultant that i originally had 7 months ago was awesome but sadly, suddenly passed away on holiday a few weeks later. The consult thats pucked up his workload is ace but to be honest i think because a rheumy was in the pipeline and consistent with his and his predecessor opinion...i was discharged. However he did ask me to ensure a full report was passed on.
He simply wasnt interested! I have had heard 4 other patients say how cruel and dismissive he can be.
I just dont get how he knows my hip pain is mechanical when he didnt even look let alone examine.
I told him about how painful my elbows are and he just squeezed the muscle above. My shirt was on! He didnt even look! Whatever he did when he squeezed the muscle though has really caused my elbow to flare up since.
In all honesty i think he was just pressing fybro points.
Still so angry but this battle has been going on for years with neuro or rheumy.
It sounds to me as if he is useless. My sister had a useless gastroenteritis consultant on the NHS with a similar attitude. He told her there was nothing wrong, would not give her a sedative for a colonoscopy etc, and it turned out he was suspended and prosecuted and is now in jail. So you do get them. All his patients had to have repeat colonoscopies and on hers a huge flat polyp was found covering the entire bowel which would have likely turned cancerous.
He should have done at least an ultrasound on your hands. They are very cheap and there is no waiting for them. I can understand the hesitancy with an MRI because there are waiting lists in some parts of the country and I found the MRI almost torture when done on my hands because of the position I had to lie in for an hour.
You really need to see someone else pronto. GPs are usually not much better, especially if they have the backing of somebody like him. I think you will need to go through the PALS procedure. Speak to the practice manager at your GP surgery and see how to go about making a complaint. One at my surgery had a go at the hospital for delaying me. If all that takes too long, then insist on a referral to another hospital. You will have to stand your ground.
As regards nodules - you often get them with RA but not everybody does. I had some which turned out to be different things on ultrasound. Even the GP could organise an ultrasound but I am not sure whether the sonographer doing it for a GP would be as experienced in identifying RA as a sonographer attached to a hospital RA unit. It is worth a try though as there must be a standard qualification. What's good about it also is that you do not have to wait for the result - you can see the machine identifying inflammation, synovitis, thickening on the screen and the sonographer will tell you as it goes along. You could possibly be referred direct to a consultant radiologist - I had one do an ultrasound on my shoulder and as a favour he did my knees for me. You could at the same time have a steroid injection to ease the painful parts.
Wishing you the very best of luck with a second opinion! It is just so stressful to have been a situation like that.....hopefully you can get re referal quickly. 🤞
Im so sorry you have gone through that. Please dont hate your body. All i can suggest is to be kind to your body, its really struggling and the flippin medics are not helping it so your body needs you to be its advocate. Wierd not quite sure where that thought came from, but re reading it thats how I feel. We and our body can work in partnership to get the best that is possible. Well saying all can say seems to have gone on a bit. Like others I would encourage you to get a second opinion. Take care. Let us know how you get on. 🙂
I know your pain and feel very much the same after every consultation. On mtx so only part of me they are interested in is my lungs - which are perfectly fine!!!!
One complain to PALS at your hospital and you will find them near the entrance to the hospital. Two get a second opinion from another rheumy darling. Sorry you have been treated like this. Hugs from me.xx
So upsetting and some of them never seem to learn. I’m a firm believer in venting so I’d be writing to this t....r and very politely and firmly telling him how you feel (stick to facts and your thoughts) and copy in the Trusts CEO. Nothing will come of it (they might invite you to formally complain) but some consultants are narcissists so a letter from you might just embarrass him professionally. You might feel better though!
So sorry to hear your story, so many similar. Please lodge a formal complaint to the hospital patient service, I did this years ago and it was taken very seriously, if not challenged these doctors/consultants will carry on doing the same day after day. No other industry would get away with it, healthcare (or lack of it) is no different! Good luck, you’ll get there eventually, get second opinion 😊
I sent such a letter having been told it would not jeopardise my future chances of treatment. Suddenly, my regular appointments dried up and , although I phoned regularly could get no further appointments for another 6 months..... during which time the condition had deteriorated. I was assured that the two events ( complaint and lack of possibility of an appointment) were unrelated!
Just saw my Rhuem. Yesterday and even though he looked at my X-rays and MRI and I told him how Enbrel made me feel better he did nothing for me and said I didn’t need to come back lol. I had to leave my last Rheum. Because my insurance changed.
Unfortunately your experience is not uncommon, but you will eventually find help. First thing, dump this man who calls himself a rheumatologist and move on quickly. You say you have a good GP, use him or her to help find someone worthy of the title.
So sorry hbeen treated appallingly. I have no idea why it is so damn hard for us to get proper treatment and to be treated like people with brains who know our bodies. I hope you are going to write an offical complaint about that waste of an appointment. Stick with it, keep tough and don't let the Bs beat you down
How awful for you......I would put in a complaint...doctors cannot behave in this manner, if they don't suffer from these illnesses how on earth do they know how it feels and how you are feeling. What an idiot, he should never laugh at a patient.
I changed my rheumatologist just over a year ago and am glad that I did. The last straw for me was when I had taken along a list of four questions that I wanted to ask her which I had neatly typed out to give to her. I was over an hour late being called in and when I said I had a few questions I needed to ask her she pushed my paper to one side and said that she was running late and didn't have time to look at them. I was so stunned that I didn't say anything at the time. Added to this she even wrote in the letter to my GP "Mrs......... had some questions to ask me but I didn't have time to answer them." My GP said that if that wasn't being fobbed off then he didn't know what was and he was happy to refer me to another rheumatologist.
I also complained to PALS who looked into it for me and got back to me about two weeks later. They said that the rheumatologist in question was retiring in a months time and that she had asked to stay on in a part-time basis but had been refused, so I think that says it all really.
Wowee! Love your fight and grit and hopefully that rheumy will be locked away in the "totally useless archive" forever!
Thank you for your comment. I don't feel that I have any fight and grit at all. I am in so much pain just now. I fell over twice in February and ruptured two tendons in each shoulder and am still suffering badly with pain from that. As if I don't have enough pain already. Sometimes life seems very unfair.
Get rid of him. Actually the meds didn help me, so my 2 friends recommended acupuncture it did wonders. I can move again and the pain is so much better.
This sounds disgraceful. Luckily for me I haven't had the need to look into this so far, but there must be a complaints procedure and a way of seeing somebody else. Maybe give the NRAS help desk a call. I'm sure they can help you or at least give you the relevant information where you can go next. All the best.
I changed my primary care doc (thank goodness) for lack of understanding and my new doc referred me to my new rheumy who I love. Just like any relationship—some just don’t work. Hope your next doc turns out to be wonderful for you.
Please try and get to see another consultant. The pain and distress is unbearable and it is not fair you should see someone who won’t even listen. You must be happy with your consultant. Keep pushing I would make sure you record your next appointment on your phone. My first Rheumy never even looked at blood tests sent me for X-rays didn’t even know what meds I was on despite being the one that had prescribed them. New Rheumy still not great but does listen. Please let us know how you get on. All the best
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Officially one year since symptoms began...
I am losing the plot due to poor consultations, has anyone had the same experience as me?
Can Rheumatoid be active without significantly increased Inflammatory Markers?
Off topic...when you're husband breaks down because he isn't coping. 😪
