What rheumatologists don't see!: I've waited for a year... - NRAS

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What rheumatologists don't see!

cliffhopper
cliffhopper
52 Replies

I've waited for a year to see you again, hoping that this will be the appointment that gets me a diagnosis. The nurse in the clinic comments on how high my blood pressure is, I suggest that it is probably stress related. She answers that there's nothing to be stressed about! If only she knew how much hope patients who don't 'tick the boxes' place on these appointments. Eventually I get called in to see the consultant, I hand you my carefully considered summary of my symptoms over the last year. You look at it like it's some sort of sensationalist newspaper article. I spent hours typing it so that it was as concise and free of emotional overtones as possible; I don't want you to have an excuse to label me as 'anxious'. You tell me that you can only consider one of my symptoms from the list, I frantically try to make a decision that will point you away from your preferred fibro diagnosis. I settle on my SI joints and tendon problems, whilst making a point of trying to tell you about the small patches of psoriasis that I've had and the newly discovered family history of psoriasis. You look at me with a look that says you are humouring me at best. I offer you images on my phone, you say that unless you see it for yourself 'it hasn't happened'.

All the SI joint provocation tests are positive, but you announce that they are 'fine'. I wonder if I am in the same room as you! Grudgingly you write a request for an MRI scan (this shows bone oedema, but apparently not enough for a diagnosis). You again suggest fibro, I know this doesn't fit my symptoms, but I'm on the verge of tears so I don't bother to argue. You take me off hydroxy (which was helping), because of the psoriasis that you don't believe I have. You suggest I take Ibuprofen, I point out that I am allergic to it, you shrug your shoulders and say that you will try and see me in six months. I leave the room with the familiar hopeless feeling that you think I am making all this up. I go and sit my car and cry whilst resolving to cancel any future appointments to avoid this hideous roller-coaster of hope and disappointment.

I'm sure common sense will prevail tomorrow, but I just wish you had some insight into how you make me (and many others) feel with your indifference.

52 Replies
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Hidden
Hidden

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.

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Nsmith13

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 !!!!!

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Hidden
Hidden
in reply to Nsmith13

So sorry you had such a horrible appt. No wonder you are p.....d off!

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Gnarli
Gnarli
in reply to Nsmith13

That sounds rubbish and I'm so sorry. Does your hospital have a PALS team you could talk to?

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Hidden
Hidden
in reply to Nsmith13

Sounds like my appts. This whole mess is disgusting!

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Hidden
Hidden

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.

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Mmrr

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

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Hidden
Hidden
in reply to Mmrr

For many years Nurses in training have been given a poem to read called Crabbitt Old Woman written in 1966 with a view to trying to help them understand an elderly patient. I just read A Nurses Response (on i-am-a-mental-nurse.blogspo... I fancy a Drs response might be similar, but some convey warmth, empathy and good care in a moment of time.

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Mmrr
Mmrr
in reply to Hidden

Norisar, yes I'm aware of these poems. They are very good at conveying each side of the story ( I was a nurse in a previous life). Poor care can't be excused - full.stop.

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Hidden
Hidden
in reply to Mmrr

Same here. I agree.

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Simba1992

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

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Bx12
Bx12
in reply to Simba1992

I am in the process of changing consultants with the blessing of my GP. I have had nothing but care from my local hospital, with one exception. Isnt it sad that this happens sometimes.

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Mmrr
Mmrr
in reply to Simba1992

Yes, trust and respect are earned. No matter who you are or what job you do.

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Fatfingers

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.

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Fatfingers

The help you need soon.

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Damaged

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 .

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Simba1992
Simba1992
in reply to Damaged

The doctors, however should be aware, if anyone, of these facts and understand how important listning is and helping understand the situation. You don't always need to have the answers.

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Damaged
Damaged
in reply to Simba1992

I could not agree more. I am so very grateful for my Rheumatologist. I trust her completely. She has been so invested in helping me achieve any level of wellness. She is always available and responds quickly to any concerns. She is the most considerate doctor I have ever encountered and there have been many. She is one of a kind. I wish I could clone her so we could all share her. I cannot stress enough how very sympathetic I am to everyone suffering without hope or answers. I hope I did not sound trite as that was not my intention. After many years without a diagnoses I am well aware of how frustrating and frightening it can be. Even a terrible diagnoses is better than not knowing what is happening. I hope we all never face a doctors apparent indifference.

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Mmrr
Mmrr
in reply to Simba1992

All care begins with listening , then observing, clarifying then analysing the situation , then reaching a conclusion , repeat if required. Sadly many Drs go straight to the 4th point and become stuck.

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nablur

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

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nablur

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. ❤️❤️❤️❤️

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medway-lady

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.

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Simba1992

I do wonder though what the role of the doctor is if he doesn't have time to listen to patients anymore. So what you say is that NHS has redefined the role of doctors. But exactly what is it?

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medway-lady

I'm not saying that at all, just that when a relationship breaks down sometimes its best to put it behind you and move on. And doctors are sometimes are very hard worked, I know one just done a 28 hour shift on an acute ward with 2 nurses.Thats not safe and its likely that he's not the only one. Who knows what was in that doctors mind, I'd like to think he was just not listening and not perhaps half asleep. We expect so much quite rightly but we're all human. If he has no diagnosis then perhaps its becuase there isn't one. I'm not medically qualified so don't know, is all I know is that there is no point in banging your head against a brick wall so try another route.

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Simba1992

You are so right. Many doctors are really burdend by a way too heavy workload and this does effect their work performance. We as patients though, come to the doctor often desperately needing help.In this situation it is not the patient who should need to understand the doctors hard situation. Yes it's true, no use banging your head against a brick wall. You need to look for a better doctor, but do you always have the strength and energy to do it?

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medway-lady

I agree its wrong and getting worse too. The nhs is great for some like me, ok for others and some for unfortunatly its awful. GP surgeries closing near us so people travel 10 miles to see a GP, no wonder they go to A&E. The whole system needs looking at and patients need to be involved in their diagnosis, trouble is if its your 30 patient that afternoon you've had no break and the last patient has been rude and they do swear at doctors then maybe the patient next through the door gets short shrift. Its totally wrong and rotten but I'd bet it happens. I just hope the OP gets a doctor who does listen and does something.

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Mmrr
Mmrr
in reply to medway-lady

medway-lady, my sympathies go to everyone working under stressful and understaffed situations whether they be in the NHS or education or whereever. I've worked in both NHS and education systems, medically retiring at the beginning of this year. I've made genuine mistakes, been exhausted after long working hours and exasperated with how little time the system permitted me with people. I've cried in private and listened to friends and family in similar situations offload together with me. I've worked many hours over my contracted hours, particularly in teaching to get the job done to an acceptable standard.

But to my knowledge I have never taken my frustration out on a patient/student, or dismissed their concerns outright. Some of the Drs we talk about here are consistent offenders and have the reputations to go with it. The medical profession has one of the most powerful 'trade unions' in the UK, namely the BMA, who constantly fight for the rights of their Drs. They have a well established seat at the table, unlike patients who are ill and sometimes in desperate situations. Medics are well renumerated for the work they do, much more so than any other health care professional, many of whom undergo long periods of training and are ' expert' in what they do. You cannot have it all ways. I've never come across a physio, or a podiatrist who has not listened to me or been sharp/unkind. I have had some who say they can offer no more , but done so in a kindly and explanatory manner.

Most medics go into medicine because it pays well (number one reason ) and offers a stable career (I'll try and find the research I read). They said little or nothing about compassion, interest in people or any other trait that would be useful in dealing with vulnerable people.

Medicine still recruits largely from the private school sector and has a disproportionate number of children of medics. Many have little or no experience of poverty, and illness without support. Bright young people from other backgrounds find it difficult to be accepted for medical training due to the unseen barriers, such as the need for voluntary work, experience (often unpaid) of 'caring' for people. Travel abroad , widening horizons etc.

Applicants for medicine are not interviewed, but admitted on examination results and the already discussed points above (which can admittedly have benefits too), but tends to draw from those best coached in how to apply, not those best suited. Although the 'god' image of Drs is not as prevailing as in former years , it still hangs around, many medics do not want to answer questions or be just plain kind.

I agree the NHS is groaning and creaking but that does not give medics the right to mistreat people in their care no matter how bad a day they have had.

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medway-lady
medway-lady
in reply to Mmrr

I appreciate your detailed respnse however I never at any point said it did I said it happen, I said it might happen and I also worked in a an environment where stress playes a huge roll, and have a medic in the family. I've cried over things I could not change in a system that failed the most vulnerable in society. And I'm not justifing what the OP's doctor did or did'nt do, or what he said or did'nt say, just making an observation; but I don't think that many just do it for the money otherwise we'd not have a shortage of doctors nor consultants ! yes its probably true about private education feeding university medical schools and sadly I think we may still have a sort of class issue going on regarding educational opportuntities; but then again we have an awful lot of foreign doctors, nurses and teachers here which are very good but why if the UK payes so well do we need to get them from abroad. Probably its becuase in part being a doctor or nurse or teacher is so stressful because they are overworked, which is why some many doctors go abroad to have a higher standard of living, more free time and more time to spend with patients. That also applies to policemen, teachers and all sorts of our public sector workers. I think without getting too political the OP had an awful time but in some parts of the UK, the nhs is so stretched its beyond help and needs to be completly overhauled.

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Mmrr
Mmrr
in reply to medway-lady

I don't think we are disagreeing , just saying the same thing in different ways. I too am from a medical family, most of us are Drs or related professions ( few of my generation and older do /did other things). None of the younger generation coming up have chose to do medicine or related careers. Remote areas in Scotland cannot attract specialists/GPs or nurses. Some are running at 50 % unfilled posts.

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medway-lady
medway-lady
in reply to Mmrr

I'm glad MMrr and its so sad Mmrr that that amount of posts go unfilled. Astonishing really and makes me so sad. xXx

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Vonnie10

Aww how sad to read x

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SnooW

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.

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GemmaSt22

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.

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Twitchytoes

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.

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Simba1992

Thank you for this very informative history of trying to make sense of your condition. Really goes to show how much at loss the doctors often are trying to find a clear diagnosis and also how frustrating the situation is for the patient. So many things happening in your body when you have an autoimmune situation and I guess the best doctors can do is try to find a med that decreases symptoms for a period at least. xSimba

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Sjhoney

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 🙄

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Soreknees2016

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.

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SLEepyhead123

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!

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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!

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Simba1992

In this situation, patients, especially those with AI chronic illnesses, do in fact need Dr. Google and good forums where many patients are very knowledgeable. So actually instead of telling patients not to google or go for help to forums, doctors and nurses should encourage it! Perhaps give directions how to best use this help😊 Maybe a way of outsourcing the help doctors are no longer able to give, for whatever reason.

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ROBERT_CARMICHAEL

In most cases you are right but there is a sizable minority for whom the real diagnosis is neurosis who look up symptoms and find many diagnoses on Google that they think they must have. Unfortunately such patients (I hesitated to use this word) do clog up surgeries and are difficult to be dissuaded of their Google self diagnoses

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Simba1992

I can very well see the problem, but don't you think part of the anxious googling is the result of not getting the real help you need from doctors? There has always been a group of people that are constantly over anxious about their health, but I am actually referring to those that have serious chronic conditions and are left without proper help. Stress is an important player in AI diseases, in perticular, something doctors are well aware of and still this seemes to be all too often disregarded in the treatment of patients. If the anxious patient is left dangling in the air without getting answers or help you can well imagine the level of stress this patient is experiencing.

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ROBERT_CARMICHAEL

I think the adequate treatment of anxiety takes a lot more time than GPs or hospital doctors have in today's grossly overstretched NHS. Also I think that over anxious patients looking up things on Google get even more worried when they read about all the rare things that they could have.

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Simba1992

That's true. And for this group it is probably not a good idea. I am referring to the hypochondriacs that have always been a strain on doctors and Dr Google does not help, not the patients and not the doctors. There is however a majority who need help on objective and realistic bases and are not receiving it adequately. Perhaps the role of the doctor is going through a transition period where in fact the doctor- patient relationship is no longer something economicly possible to invest in. Perhaps in the future robots like Alexa will take over the dialog between doctors and patients. Still leaves the question of what then will the new role of a doctor be (!?)

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Tracipanther

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.

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Simba1992

😳☹️

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Annieb24

Sadly a very similar experience.

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Hidden
Hidden

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

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ButterflySue

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

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Rubyroo1

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.

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louise-a

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

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