I have been suffering symptons for long time and finally I was told my a neurologist that my immune system might be the problem he ran some tests of which I didn't understand at the time, they came back as ANA positive twice, he then referred mt o see a rheumatologist to have it all explained to me and to see if I needed further treatment, he was most unhelpful and vey rude, he wouldn't explain my results he said I would not understand them then went on to tell me I have Fibromyalgia without an examination , when his letter came through telling me what he had sent to my GP saying that I had tested positive for ANA and a titre of 1640 , and that he wants to see me again in6 months time to see if anything evolves??? I tried to tell him that I had been really ill for 6 weeks and have now developed a rash and that im having really bad chest pains which I have had a long time ,left sided, and a whole list of symptons, I don't think I can wait 6 months before something is done, im so depressed , what shall I do, the thought of having to go through it all again makes me feel worse
im so unhappy with rheumotologist: I have been... - LUPUS UK
im so unhappy with rheumotologist
Sorry to learn that this man was so unpleasant - there's really no need for such behaviour and I think you should ask your GP to refer you to a different rheumatologist as soon as possible. If you are in the UK then you have a right to seek a second opinion. I agree six months is too long to wait with your worsening symptoms. Twitchy
thankyou for your reply, I feel like im going out of my mind at present, the sectary from the neurologist has told me to complain about the rheumatologist as many have done as he is known to be very rude, she said that she will speak to the neurologist for me, he was the one dwho referred me in the first place and run the tests that have come back positive,ARGH!!! I never knew anything about this disease until 4 weeks ago apart from I felt ill all the time.
You are most welcome and I'm so sorry your first experience of a rheumatologist has been this one. Both those I've been under and a third I sought a second opinion from were perfectly reasonable and polite men - although I'm a tricky customer with rheumatoid arthritis (RA) that appears to have morphed and negative autoabtibodies now (they were a weak positive for RA five years ago). I can see why my case might exasperate them!
I have found the Lupus UK site and other HealthUnlocked communities to be indispensable sources of information re diagnosis, treatments and support. I really do believe that it's good to read up and learn as much about Lupus and connective tissue diseases as possible.
Even if this man is terribly rude he wouldn't be seeing you again if he didn't believe that you have some form of connective tissue disease. So the main advice I have is to read up and try to find a rheumatologist who will work with you rather than one who will suffer you.
I haven't found the entire profession a wash out at all and I was a guest speaker in 2014 at EULAR - one of the world's largest rheumatology congresses. Also I am an ambassador for the RA charity and have met three rheumatologists who have been our guest speakers - all seem reasonably nice people.
On the other hand a friend from the RA community has just posted describing her second appalling consultation with her second orthopaedic hand doctor. He knew nothing whatsoever about her but started screaming at her the moment she sat down - he didn't have her notes and he had her weeping uncontrollably within minutes! The first one had made her feel like an ant too.
Doctors come in all sorts of shapes and sizes like lawyers and teachers and all the other professions. Some get power complexes, many get compassion fatigue but some are very good and reasonably kind. I think the way to proceed is to do your research and find one of the latter if you possibly can. Best of luck. Twitchy X
I get that and thank you, I was just so shocked that he was very rude , and I am used to the medical professions as I work along side many of them at times, but he made me feel like I shouldn't even be there, if I hadn't have just come off a night shift I would have been able to have dealt with him, but I was very tired and feeling so low with it all , he was the icing on the cake, but know after having some good advice and listening to others im ready to see another, I waited a month to see him and was hoping he was going to be helpful but he clearly not, shall put it down experience. apparently he has had lots of complaints lately.
Good to know you are not the only one. You would have thought, in this internet day and age, that doctors would be more careful about their manner. But perhaps Doc Martin behaviour has caught on and they think it's okay to be rude to patients?
Glad you've recovered your fighting spirit. My hubby worked nights until recently and it really knocks the stuffing out of a person at the best of times. A month is quite fast in rheumatology but I do hope you can see someone else soon and get proper answers. X
Go back to your regular doctor and be referred out to another rheumatologist. Some of them are butt holes. I can relate going through something similar. If it weren't for the meds working other than flares I would leave mine as well.
I generally hate Rheumatologists (except some outstanding few) - they have no compassion, care, any emotional intelligence, let alone some basic diagnostic skills which many of us have as patients. They rarely look at previous tests available and only look at ones they arranged themselves (an easy option for them)
Why are they getting paid on the NHS????? They are getting paid a lot (plus NHS pensions?) and they also work privately to supplement their incomes. I wouldn't mind if they are doing their job properly. But often they aren't and it's only too evident based on what we read on the forum all too often. Could Lupus UK do more to change this "outdated corporate culture" in Rheumatology (which is letting us down) up and down the country??
These disinterested Rheumatologists are the last ones we "need" working on the NHS. Perhaps, DoH / care quality commissions etc ought to look into this as well if LupusUK can't? They are often so lazy, uninterested, treat patients badly and does not pay attention to clinical symptoms leaving patients in danger of serious harm from SLE!! Not everyone but good ones are so few, as well. I often wonder if these Rheumatologists think SLE patients are "easy". Something is seriously NOT right!
oh boy: you've got me going coniston: i'm a typical libra who weighs up both sides of most things... so: 1st a bad rheumatology experience, and then a good one...sadly the bad rheumatology side of the scales seems to rest lower most of the time
this discussion is reminding me of the nhs rheumatologist my gp referred me to many years ago...at the time medics were tending to blame all my multisystem probs on my chronic early onset spine condition. this rheumatologist sat behind her desk and asked me why i was seeing her. i told her about my chronic spine pain + fatigue + neurological stuff (at that time i knew literally NOTHING about immune dysfunction, and had never even heard of lupus, so i never thought to mention all my other chronic stuff (mouth, nose, ear, extremity lesions + skin reactivity + reactions to temperature etc etc)). well, she listened. she didn't say anything until i'd said my bit: asked no further questions, but said: i feel very very sorry for people like you. goodbye. my impression is that this sort of lazy, negligent rheumatology behavior goes on lots of the time...as it has for you & lmrd
so, a contrasting experience: 6 years ago I was in my mid-late 50s when my pain consultant finally urged me to ask my gp for referral to rheumatology to be investigated re autoimmune conditions, i thought: oh no! and the first rheumatologist i saw was at least somewhat interested, but of course i presented in a very unprepared way because i'd been so cowed by 30 years of the system telling me my collection of chronic symptoms & diagnosed conditions were normal. well, at least he ran blood tests... and because he handed me the blood test order form i spotted one actual word amongst the abbreviations...that word was lupus. this word gave me a handle on the situation. even before the test results came back, my mother had amazed me with the news of my lupus diagnosis in infancy. as a result, i was able to find a local nhs rheumatology lupus clinic. i contacted lupus uk for help preparing for my first clinic appointment. a brilliant lupus-expert consultant spent 2 hours interviewing & examining me...she started me on hydroxy immediately, even without blood results. over the past 5 years every med she has added to my treatment plan has helped significantly. now i'm on daily low doses of hydroxy + pred + myco + amitriptyline, feeling better than i have since my 20s. even if all this genius rheumatologist helps me to is 10 less painful years, i'm happy and massively grateful
i just wish there were more good rheumatologists walking this planet: clinicians who are not afraid to be true detectives...the type that think outside the box, and really care about finding solutions to complex presentations. medics in other disciplines have told me rheumatology clinic is the last resort of all hopeless cases...i sometimes wonder if it's also the fav specialty of really lazy nasty medical students...
I've been wondering something similar - if I didn't know a few outstanding and empathetic rheumatologists who really DO care in my own field I'd feel much more strongly. I've wondered if rheumatology appears a very easy option: mostly rheumatoid arthritis, fairly clear diagnostic tests that are also read by other medics in the lab so less thinking for them. Then they get there and discover it isn't quite as straightforward as they thought and that actually there are an awful lot of patients they can't CURE! Many they can barely help achieve comfort. And actually, more not RA than RA. That makes them depressed - but they have already invested so much they can't/won't change horses.
I'm going to the OMERACT meeting in May as a patient representative - I'm very much looking forward to meeting a lot of rheumatologists who you would think might be particularly approachable. I will tell you what I find/think.
I think neurology may be seen as even more last resort - according to one hospital doctor I was chatting to last year! X
Hi coniston11,
I'm sorry to hear that you have had such negative experiences with rheumatologists who you have seen. I'm not certain that there is an 'outdated corporate culture' that is systemic across rheumatology in the UK. We would encourage anybody who has a bad experience with any consultant to try and resolve the problem with PALs, or if necessary seek assistance with NHS Complaints Advocacy.
Hi, thank you for your reply, I was asked by my Neurologist sectary to send email of my experience with Rheumatologist explaining what happened and he has already wrote back to me informing me that he will be arranging another appointment with himself as soon as possible , this is great news for me,
That's great to hear. I'm glad that you've got such a supportive doctor. Let us know how you get on.
When ever I go to a specialist who has been rude, I bring my husband with me who looks pretty scary and that seems to control the behavior somewhat. Do you have a strong looking friend you could bring along who you don't mind knowing your business?
Lol, I do not but I may just start bringing my dad.
My rummy dr is about 40..she is chief of staff. She gives me her number..when I text her she calls me immediately..she hugs me after my visits..she is beautiful..there are great drs out there..you will find one..good luck to you.
I had almost the exact same experience last week.saw the Rheumatologist after a 3 month wait.My symptoms go back years.My ANA is 1:640( like yours)my ds DNA negative,ENA 0.2 to a few things UIRNP,sm, ss-A/Ro,ssB/La,centromere scl-70,ang Jo1.
They checked out my hands a lot, did a pee test,asked a few questions,zeroed in my my rotator cuff tear( actually said " it's not torn necessarily ( i said yes it is that's what the MRI showed).I felt like they were looking for Arthritis.
Long story short, she said come back in 6 months. " it's not a definite yes nor a definite no" no further on really. They make me feel like I'm lying on the witness stand. Hang in there .😐
"They make me feel like I'm lying on the witness stand. Hand in there ."
They certainly do love their control, authority and power whilst they do nothing or so little whilst someone is getting worse slowly but steadily. The original thread is a fine example.
My Neurologist told me about this too. He tells me his patients are not getting any help from Rheumatologists whilst these patients are bad enough to end up in Neurology clinic to start with!! Such a state, Rheumatology - whilst there are very few exceptions. I believe their priority is completely out of order. They ought to focus on getting patients better and send them back to work / family life as quick as possible. Much longer they delay things (e.g. treatments), patients would be less likely to be able to go back to work / family life as everything would be crumbled down by then. Just crazy. Their priority is not on patients but on their silly diagnostic manuals they have been referring to. Clearly, their manual is so dated and is not effective!
thank you for your reply, I feele im going crazy, my ds DNA came back positive and ANA 1640 don't know the rest of my results as he was not prepared to discuss it with me, I have lots of symptoms and have noticed that im getting worse, until 4 weeks ago knew nothing of this condition, other symptoms appear , im trying to hold my job down and working nights is not easy as its is also have young children, I just wish they give me some hope of medication to at least try as im in fear that if this carries on I will end up having to take time off work which I dint want to do
I just want to make clear that it is *totally* unacceptable for him to refuse to discuss your test results with you! (Presumably his communication skills are lousy but he's pretending it's your problem. That's the sort of thing that makes me really annoyed and feisty!)
He should have sent the test results to your GP, so you ought to be able to make an appointment to discuss them with him/her instead. You can phone the surgery and check the results or 'consultant's report' has come back before you book the appointment. If you've got a good relationship with your GP you could discuss your other concerns with him/her too...
Hello. I'm sorry to read your post and the sad replies you have had from others. Getting a firm diagnosis and then medication is so important. I was lucky enough to have bloods done by a GP and she told me I had lupus and needed to see a rheumatologist to confirm and get a prescription. Luckily for me we had private health care and I saw a rheumatologist within 3 weeks - he agreed with GP, diagnosed SCLE and gave me a prescription for 400mg hydroxychloroquine a day. However the medical insurance won't monitor chronic conditions and so I had to do this on the NHS. I then waited 5 months for NHS rheumy appointment. It scared me to think how much further down hill I could have gone, waiting another 5 months with no medication. I was also very depressed on top of everything else. She was more thorough in her investigations I.e. I was sent for ECGs, X-rays of my chest, hands and feet etc etc. But then she confirmed what the first one had told me. I guess what I am saying is, if you can afford it and you are desperate, see a private rheumy just to get that diagnoses and prescription in your hand and then get your GP to refer you to a different NHS rheumy as that one is obviously not going to cut it. From memory I did see the private rheumy's bill and it was about £180. I know it's a lot of money but if it gets you some medication and sets you in the right track. There have been others on here that have paid to get a diagnosis too. I do agree with the reply above though, can Lupus UK help? Not sure how quickly the system's attitude to lupus can be changed though. Good luck and let us know how you get on.
Great reply, Wendy..I've used that private/NHS route myself consulting other disciplines over the years...and I've never had health insurance so always self payed going private....this combo route to diagnosis & treatment really can work.
But, whatever route you follow to diagnosis & treatment, problems still can occur in complex cases, eg cases of seroneg lupus. I was seroneg when the process of diagnosis & treatment began in my mid 50s 6 years ago...after a lifetime living with a lost infant onset lupus diagnosis. I'm sure my bloods would've tested positive many times during those lost years, had a medic decided to run tests. But none did. And by the time my brilliant rheumatologist finally figured my case out, she had to begin treatment based on clinical examination & history (although there were some blood result indications: eg low complements). She is what I call a true detective: ie she doesn't just follow standard diagnostic protocols blindly....and she doesn't practice privately!
BC: "i just wish there more good rheumatologists walking this planet: clinicians who are not afraid to be true detectives...the type that think outside the box, and really cares about finding solutions to complex presentations. medics in other disciplines have told me rheumatology clinic is the last resort of all hopeless cases...i sometimes wonder if it's also the fav specialty of really lazy nasty medical students..."
Wendy39: "do agree with the reply above though, can Lupus UK help? Not sure how quickly the system's attitude to lupus can be changed though. Good luck and let us know how you get on."
You have summarised it so beautifully, BC 
You are so incredible. Wendy39, excellent insights in your post Yes, you are SO right. Thank you for sharing and have a wonderful Sunday afternoon. 
I am so sorry to hear of what you are going through. I have gone through it myself with specialists. The difference is it all changed whe I was referred to a rheumatologist. I am one of the lucky ones who is seeing a truly wonderful one. His register, who I saw on my first visit, was just as good. It was him who first noted all my symptoms, ordered tests and sent me to ophthalmology. My second visit was with the consultant. He said that my symptoms point to lupus but my bloods are negative. Went on to say that around 2% of lupus patients have negative bloods and I could be one of that 2%. Hasn't committed to a diagnosis yet but I was started on Hydroxychloroquine. It has helped with a good few of the symptoms. I'm back at rheumatology in May.
I do think you should ask for a second opinion. Hopefully you have a good relationship with your GP and they can refer you to a different rheumatologist.
Wonderful story & reply 👏👍😘
Go get a second opinion,I did.
I have had exactly the same treatment from my consultant, I'm going to ask to see someone else. Xx
Come on, everyone - we have all had bad experiences, I agree. But to disregard the years it took all these people to study, pass exams, train, go through countless tests and patients to even make junior doctor, let alone an experienced consultant - I'm sorry, I can't subscribe to that.
Being a doctor is not an easy job. Bombarded by the ails of the world non-stop on a daily basis by patients that you come to realise that medicine is unable to help, or having to justify budgets and statistics and having to go to continuous improvement lectures in your 'spare' time to be able to continue practising, etc - that's not easy.
If it were that easy we would all do it from our armchair.
Some believe rheumatology is a simple. On the contrary - a rheumatologist needs to learn everything about the body to be able to do his job. Just think of what lupus does to our bodies - everything from skin, nerves, blood vessels, various glands, musculoskeletal structure, brain, eyes, major organs, smaller organs, hair. Again - to diminish the breadth of this speciality is not right, I don't agree.
As Twitchy said above, though - there are doctors and doctors. Some are good, some are not that good but our impressions are subjective. I might prefer someone who is direct and shoots from the hip, whilst others would rather deal with a sensitive one. It's all in the way we perceive their behaviour.
But we aren't without power. if we prepare for these appointments in advance and make clear to the doctor what we are expecting from them, if we politely tell them that the way they treat us is wrong, if we express our dissatisfaction during the consultation, at least we have put our views across.
It doesn't always work, of course not. It might mean we have to change the specialist, or raise the issue with the management or even go privately but I'd doesn't mean we are helpless.
It is our health, guys - OUR duty to fight for it even if that means standing up for what we believe our care should be like.
Hi Imrd,
I'm sorry to hear that you had such a negative experience with this rheumatologist. Have you considered lodging a complaint with either the hospital's PALs team or with NHS Complaints Advocacy? - nhscomplaintsadvocacy.org/
I notice in your comments that you've been back in touch with the neurology team. Hopefully your neurologist will be able to refer you to a different rheumatologist for a second opinion. If you would like to be seen by a lupus specialist, let me know whereabouts you live and I can let you know of any who may be near to you. Then you could try asking about a referral to them?
If you would like more information about lupus and how it is diagnosed, we have a free pack that you can download or request at lupusuk.org.uk/contact-us/
Hi, I have good news today, my Neurologist has contacted me to ask to see me .he is arranging an appointment as soon as possible, with regards to my bad experience with the Rheumatologist , and to help me plan for the future. thankyou for your advice, and if I have no luck this time I will contact you again to talk about being referred to someone in my area, once again thanks
If you are having chest pains you should ring 111 and they will get you to the hospital via an ambulance. Hopefully you will then be assessed properly to find out the cause of the pain and more blood tests will be done.
All the best
🙏🏽💐
Hi Imrd, I hate to tell you but nearly all of these types of illness are Auto-Immune diseases. Your doctor is mucking you around with things you don't understand. Don't let him/her get away with it. Make them explain so you can understand. Most of a Rheumatologists patients suffer from auto-immune diseases so I don't know what he/she is on about. If your not satisfied tell your GP so you can obtain a new referral to see someone else.
Hope this helps.
hi, thanks, that was a few months now, I have been back to be told it is very mild and that I will be tested again in a few m months, also been told I have fibromyalgia, I have been put on gabapentin but can only take a low dose until im used to them as they make me really drowsy and I cant cope as I work nights and ,I just feel like im not listened to, im not feeling as bad as I was, thankfully!, but fed up with pain.
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