This is my first post and I didn’t know quite where to start, so I thought I’d begin with a question I’ve been mulling over...
I’m curious. It seems there’s some kind of parallel universe thing going on. On the one hand, every Rheumatologist profile boasts exceptional research, discovery, open-mindedness, a passion to get to the root of these dreadful autoimmune diseases. On the other, almost every patient I’ve encountered who has an autoimmune disease or expected has fought or is fighting relentlessly to be heard.
Why does nobody seem able to see these rheumatologists purporting to be the best? I myself have emailed a selection over the last few days, detailing my struggles and asking if they’d mind trying to help me in some way being they’re the best in the business. I offered to pay for a private Zoom appointment if possible, or just a name of someone or somewhere I might try. If nothing else, just to ask whether they must see abnormalities in lab results or if they do indeed encounter cases they’d diagnosed as having autoimmune disease yet, on paper, has ‘normal’ blood results.
Responses varied from nothing (which I quite understand- I’m not a patient and they’re busy), to abrupt and unsympathetic. No response would have been better. Do I deserve a reply? No. Do I expect one? No. If I get one do I deserve kindness and courtesy as I extended to them? Of course - doesn’t everyone? So you can imagine I was a little upset when accidentally copied in to an email from one Dr to another saying “hope it didn’t waste too much time”. I just replied and said I’m sorry for wasting any.
So I’m a little perplexed. In theory there are wonderful, kind, supportive rheumatologists who genuinely care about helping those with autoimmune disease and being open to its many weird and wonderful presentations. In reality, given the average time to diagnosis is 6 years and the average number of consultants seen is 4 (suggesting some poor people go a lot longer and see a lot more), along with the uncaring responses and crass internal communication I’ve been privy to, they’re pretty elusive!
I’d love to know your experiences, any real disappointments, how feeling like a hypochondriac or lunatic may have affected you, and how you finally got to a point where someone actually listened. We know our bodies right?
I’m years and years in. Like, 20 plus. Phases of trying to get answers then feeling better so stopping. We’re back in full swing at the moment. Feeling horrific. Positive speckled ANA and more symptoms than you can shake a stick at (bruising, malar rash, arthritis everywhere, tendonitis everywhere, bursitis, tonsillitis (every itis), headaches, exhaustion, chillblains, raynauds, dry eyes, insomnia, depression, itching, liver issues, swollen lymph nodes) - you name it, I got it. But there’s nothing wrong with me. Apart from the ANA and liver enzymes, my bloods are normal.
So I’ve got Fibromyalgia, Hypermobility and POTS too, all well managed. Everything is being put down to those. Only it doesn’t fit. Not entirely. I’m back to the drawing board only this time I’m determined to get some proper answers. It’s already feeling like a bumpy ride ahead though so wish me luck and please, join me on my journey, share tips and tricks to getting the end result and let’s stick together. It sounds like we need to!
Have the best week!!
Natasha xx
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Thank you so much happytulip, I will certainly reach out and see what Melanie has said. So pleased to have been pointed toward this forum and to get to know others who understand. I know I’m very lucky in that the severity of my flares/symptoms/imagination is much less severe than others but just to be alongside and learn so much more from individuals is a real privilege.
Thank you. These are fantastic. Haven't had a chance to have a proper look yet but I did read one research paper and it was fascinating so very much looking forward to reading some more xx
Link to Cambridge Uni's research led by Melanie Sloan ❤️🌈🤩 in reply to HT below.....here's an extract from the paper 'But you don't look sick':
'lack of visible symptoms (despite frequent organ damage) and led to misdiagnoses/delayed diagnosis, disbelief and dismissal, with many being told ‘but you don’t look sick’.
Apologies for the delay eekt (I've got a lot of these to write today), despite nothing being wrong with me at all except hypochondria, I've been unable to type because my hands have been hurting so much. I must go any get my head looked at and stop making such a fuss 🙊
Thanks so much for sharing. Have a wonderful weekend!xxx
My goodness, I think you've broken the record for the number of replies!!!
😆 ...you've certainly struck a chord! Well, if you read Melanie's papers, you'll see that being misdiagnosed with some form of *hysteria* is very common in lupus and other autoimmune diseases because many doctors are still in the dark ages....three years after mine (with dsDNA, ANA etc, by a rhuemy), my GP recommended a psychiatric referral because he's stupid (16 years to qualify, unable to comprehend dozens of consultants' letters and can't spell dysthymia, in case anyone thinks I'm maligning a medical professional )....so you're not alone, once more into the breech! 💪
Thank you so much Maggie and apologies for the delay in my reply. I never expected to get any more than one or two comments so have only just now been able to sit down and read them all properly and reply. I knew people were having a frustrating time but didn't realise it was quite such a nightmare.
Love your response to your boss! Quite right too. It's actually so rude even when it's meant as a compliment.
It's like when people feel it's ok to comment if they think you're underweight - "you're looking a bit skinny, need to eat a few donuts" (I've had anorexia in the past so had a few of these remarks) yet I can't imagine many people would say "cor, you've packed on the pounds lately, isn't it about time you dieted?"
I think the sadness is the lack of recognition among rheumatologists that delay in diagnosis and thus treatment can lead to worse outcomes. So not only is the lupus harming us, but so potentially are the doctors who don't take this condition or their patients seriously.
Couldn't agree more. I completely appreciate Rheumatologists are the 'experts' on paper. However, they accept themselves the area is a minefield and although they may be experts in what they have been taught, the best expert in how you feel is you and that can't be disputed.
Going through the same 🙏 Now I’m told I’m depressed and that’s causing it 🤬🤬🤬 I’ve suffered depression in life, I am not depressed …….. yet, I am perplexed , frustrated and angry. The docs are causing more harm than good , I’ve had such a mixture of response and much from same docs from, this is not right , you have this , you have that, to we can see nothing. Take one doc, diagnosed one thing, arranged more tests for other things, scratched head, tests don’t match thinking so say end of that. By tests I mean more blood tests and trial of antihistamines. Any other tests that mentioned ie biopsy, muscle biopsy, lumber punch, only ever next step in consultation but never come to fruition. Told nothing comes and goes and can’t just see different specialists as wouldnt know where to send you anyway. Acknowledge symptoms but can’t match to anything. This is all after being told I can’t understand what’s causing the organ damage. Seen rheumatology, which was very dismissive and before current problems yet that is history referred to, then comes pandemic on top and not seen anyone just dermy. Photos and diary not interested in , ( what a lot of work for nothing) as needs to be seen in person. My body don’t work to order sadly .when it has and tried to get in touch can’t get seen 🤬
Ironically seen on friday , told can’t stay on books, seen by hospital yesterday with tendinitis rearing severely again.
Oh no !! They have discharged you? I am so very sorry lovely. Please don’t accept it. When Mr Hysteria wanted to discharge me my GP actually fought for me and succeeded I stayed on the books. Huge Cwtches to you. We seem to be on the same journey and it is demoralising and frustrating. I am seriously depressed and it is no wonder xxx
Hi cecily, I expect so, her attitude was so different, she had someone with her and it was like seeing the 2nd rheumy again but hey, same hospital, same referring to rheumy so if all refer back there what’s the point. The interest and care was gone as was the said next steps from last appointment. I’m not even as angry but I think I’m resigned to the fact that with no answers they get rid of. I’ve had all the good advice from forum which can’t be put in place because it’s just them asking and answering themselves, yes no questions which are not fitting and no asking you, and no looking at what you want looked at. It would be a long story, the back tracking , the hypocrisy and to me the appointments should be recorded as I’ve nothing to hide but things said and not seen/done really don’t add up. It’s all sheer crazy making and to say we believe and can see your symptoms in one breathe but to say, in another but we don’t know everything and can’t keep you on books forever and can’t pass you to different specialities and basically every polite cop out and even arguing with me that I had seen neurologist when I haven’t and then saying well he’s done tests, it’s just crazy. I’m tired, I’m reassured by friends and family I’m not depressed or showing signs of , I’m not mad, I’m not imagining things, thank god for that, 🙏 it is nice but doesn’t help but neither do they. I don’t take comfort in being told I’ve had so many tests done that show nothing as , no tests have been furthered, there’s numerous tests, there’s numerous different docs for different problems to be seen but I’ve not had much. Bloods and bloods again, nerve tests and chest ct scan also a trial of antihistamines . Wow numerous tests. No muscle biopsy when said next step, no skin biopsy no……….Each time it comes to next step, I’m gotten rid of. Rheumy decided to sign me off to save biopsy, dermy last said if antihistamines did nothing to clear skin she’d send to mctd clinic and it would be a watch and wait thing. This time all change. Why both have gotten someone to sit with them when doing this bests me 🤷♀️
The one I didn’t see face to face , the neuro who left, from a different hospital, was the only one to ask me of problems, he listened, he asked for photos and diaries, he was honest seemingly, he said he’d done genetic tests and wanted test for myasthenia ruled out though you can have with negative tests and I’ve had also been considering melkerson rosenthal 🤷♀️
The pandemic was reason for not wanting me at hospital to be seen yet then. I’ve not been seen, dermy before said her team acknowledged the weakness and need for urgent referral on top of ent and facial. But nothing, no eye tests nothing. Ironically I ended up in hospital walk in Monday with what they said was tendinitis/psi’s and he said what’s wrong with your face and was incredulous when I said I didn’t know. I explained and he said it’s not good enough you need to push. 🙈🤣🤣 like I’ve not tried.
I’m just angry now. The dermy asked has your gp not diagnosed pmr? I said no, I thought no more until I got home, but I’ve not even seen gp since before pandemic began. You know my gp is far from in my corner, and still telephone appointments and I don’t see what I will benefit from gp, who just says everything’s a fibro symptom and despite facial saying not Bell’s palsy or blepharitis insists it is and won’t refer to eye specialist but offers eye drops, which I obtained from optician who said he would leave me to see neuro but I had very dry eyes and don’t blink much and to use the drops 🤷♀️.
I just have no positive remarks but to say Thankyou for your understanding 🙏🤗xx
Oh lovely I do not know what to say except that I am so sorry and I totally understand. As you know my great hope Rheumy who told me he was sorry that I had been treated so badly and that Rheumatologists could not seem to agree on what I had which cannot be easy. The one who reassured me that we would start from scratch as soon as he could get me into clinic which made me cry with relief, gave me a five minute call, wanted to put me back on Hydroxychloroquine and got arsey when I refused because of my sight and said I can start Coclchicine every other day even though I tried it twice. I suppose 💩💩 yourself every other day doesn’t count to him 🙄. What is wrong with these people? I cannot believe that they consciously try to be obstructive, disinterested, uncaring and dismissive so why? I do not think they understand just how devastating it is for us to be on the end of the phone or sat in front of them when they behave this way. You go through all the range of feelings, helplessness, hopelessness, anger, despair. I am so pleased that you are not depressed, it is amazing that you are not. I am very depressed. I now have no GP support either and my hope has evaporated with the last phone call. What are you going to do next? Can you afford a private consultation? I send you huge Cwtches and lots of love. We deserve better xxx
I know you understand with your own experiences 🙏 I don’t know what I will do at the moment, not many options, private would prove very difficult even if possible and I’ve got enough to deal with without being chipped away at with more of the same. My daughter is on school holidays so I can’t think for now snd though I don’t think I’m depresssed, I’m not happy snd don’t want daughter to suffer for it. I’ve worked hard at keeping my mental health above water on this journey. I did get very depressed in the beginning of this journey but have been mindful to keep mentally safe if I can’t do nothing about my physical Heath. I’m more frustrated, angry faithless and lost and bit anxious I guess. If I get depressed I would never say anyway as that would just be a label like fibro 🤷♀️ And I hope I don’t as no doubt there’d be no help available anyhow. As Scarlet Ohara said’ tomorrow’s another day, ‘ ill just keep getting through them for now 🤷♀️🙏
Yes we do deserve better, I wouldn’t wish this mess on my worst enemy I don’t think.
Well since that wonderful specimen of excellence diagnosed “ hysteria”, everything from cellulitis, asthma and nosebleeds with me are being put down to anxiety but my depression is overwhelming me currently and whilst I accept it is not all health related it certainly does not help. I do wonder if I went all psycho on them whether they would shoot me with a tranquilliser dart and have done with it lol All we can do is to keep on keeping on until we find someone who cares enough to try and help xxx
Thankyou 🙏 it’s hard to accept when I’ve not even been seen by neuro for urgent appointment from before pandemic. How can anything be ruled in or out if not seen by them. Dermy said herself she will only deal with skin issues yet feels her place to say there’s no diagnosis for multiple symptoms and order more bloods in search of something 🤬It’s upsetting and hugely unsettling .Thankyou for your understanding support 🙏x
Seems the pretty standard approach doesn't it? Tell you what it isn't but no further help. My sincere apologies for not replying properly to all your wonderful posts on here. My hands have been causing me hell and eyes so dry reading is giving me headaches (but there's nothing wrong with me 😜). I'm going to drop you a message in a sec. If you ever want to WhatsApp, FaceTime, Phone whatever, please do. I can empathise totally, although I don't think I can understand fully as you seem to be having a far rougher ride than me. But I care and will always gladly be an ear if nothing else.
I may write another post but I'm worried I'll get booted off the forum. In respect of alternative therapies. I'm no doctor and I'm certainly not an advocate or otherwise on anything because I've no such authority, BUT, I am really interested in others' views on holistic methods or alternatives. By alternatives I mean things like medical cannabis. Caveat here - I am NOT a raving drug addict and have never touched an illegal drug in my life (well that's not true, I have touched it but never taken any - explain in a mo). I also have no problem with raving drug addicts either, no judgement whatsoever here. Just want to be clear I'm not endorsing or advocating doing anything illegal because I put it out and ask whether anyone has any experience of such methods and how have they found it?
I only ask because when my mum was diagnosed with terminal bowel cancer we looked at literally everything. In literally our naughtiest act ever, we resorted to cannabis oil, the proper hardcore stuff. Yikes. But I have zero shame in that. My mum was dying and we were desperate. Now, its a really long story and not one for here however, I did an awful lot of research, medical journals not just asking Siri or Alexa. Concluded taking it rectally with coconut oil was the safest and most effective way etc. At the time my mum started it, she had a massive bowel tumour, lung mets and a liver riddled in the stuff. The liver was the bit that would kill her and it was such a mess the only possible solution would be to cut it off but it was so bad it wasn't operable. Mum did it in conjunction with Chemo for 3 months. She was told chemo would literally slow progression but nothing more. We kept the naughty stuff a secret. Her consultant was a total **** (insert whatever insult you see fit).
Now, it may be coincidence, it may have happened anyway and it may have nothing to do with the oil but, it turns out, after 3 months of use, her melon sized bowel tumour was no longer detectable, there were no longer detectable tumours on her lungs and the liver mets had reduced by 50%. Keep going like that and she'd be cancer free in 3 months and her liver would be operable if it was even needed. Only the consultant forgot to tell us that bit. I only know from obtaining her medical records when it was too late. Thinking it wasn't helping and presuming she was still deteriorating, mum stopped chemo and cannabis. She was also put through chemo when she had a nasty chest infection which they didn't pick up because her bloods didn't show one and her temperature was normal (see why I'm sceptical of bloods). She had a chest rattle and felt like crap. Was told disease progression. Told the only way she'd feel better was chemo so she had it. 2 hours later was in resus, lungs full of fluid and heart failure. Pulled through, just, IV antibiotics for 5 days and she was the best she'd felt in months. Consultant said it was the chemo that made her better... anyway, that frightened her off chemo again even though she knew it was the infection really. We were let down throughout that journey and now I don't have a mum. It's not their fault she had cancer and there's every possibility none of what we did helped, but I had to become an oncologist overnight and read 18 hours a day to try and do something because no one else was going to.
But that's by the by for this purpose - just wanted to add context.
So I am a great believer that things like cannabis can, if used safely and carefully, really help activate our bodies healing function and reduce inflammation but, as I say, I am NOT advocating anyone start eating hash cakes or smoking a bong in the garden.
I wondered if anyone else has looked into it at all? It seems logical to me that our bodies are fighting something, even though we don't know what, and if that inflammation is harming us, can we do anything ourselves to try and self medicate IF we're not getting any help elsewhere? There's a lot of anecdotal evidence on these things but of course, it's dismissed as not being evidence (surely if there's enough of it then it should be an available option?)
I have finally got myself an appointment with another two rheumys, one through insurance and one I'm paying for. Appreciate I'm very lucky to be able to do this but I will definitely share any insights I glean from these appointments all being well. One of them is a great believer in alternative methods as well as conventional. She's a medical professor, not a quack, but looks very closely at the nutrition, exercise and complementary stuff alongside conventional meds. I'm going to ask her about the cannabis (and magic mushrooms too) and see if she's any views.
To be honest, I've reached a stage where I'm having such a miserable time and feeling so horrendous that if I can't get help through the 'correct' channels by the end of this month, I will take matters into my own hands. I've enough experience to know that not all Drs act in the best interests of their patients, a lot get things wrong and that in a way is ok as long as they admit they're not oracles. Medicine is obviously an ever evolving field and mistakes are what lead to breakthroughs. It's the obnoxious "we know everything" approach that infuriates me.
Just to clarify, with the cannabis stuff I read and researched for months. I do not advocate hitting up the local dealer and asking for an eighth (I think that's what they call it). I went to great lengths to find a supplier of medical grade cannabis oil from someone, as reputable as is possible in these murky waters, who specialised in helping people with cancer. It was administered rectally alongside coconut oil to increase bioavailability meaning we could use less. It also meant it wasn't metabolised by the liver thus significantly reducing the 'high'. My mother wasn't keen on being off her face or high as a kite. To give you an idea of how naive she was in respect of drugs she thought if she was stoned she'd be hyper...😂🙈
Over and out for now, fingers crossed I'm not arrested! xx
Thanks kat 🙏 no progress, just crazy making confusion and now a depression card. Funny though no fibromyalgia diagnosis for it all 🤷♀️I think people are fed up with my situation, I know I am, I tell you here how each appointment goes just to have another and it’s totally different. I don’t even know what to feel to be fair, I’m told one thing, another’s written another’s said . I just wanted answers 🙏 not to sign up for all this, it’s crazy. Take this appointment my eye slightly opened during appointment , it does this very occasionally , by no means open as still droops even when don’t close and dermy said see your eyes ok now. I just couldn’t write it. She said you’ve had so many bloods done we can see no disease, I said good what is it then.
It’s like it’s not what they think so go away. Neuro said it may not be one thing but few different things when I was talking to him, yes maybe, but hey I will never know as no one interested now. Still told no one taken over his patients yet and to phone back, ent not phoned back despite few efforts to contact them .
I don’t see a way forward , I feel like here at least I’ve hit a brick wall. I mentioned to someone before, that in london I never once for any need to visit doc or hospital for help walked away without an answer for my ailments . I was always directed by go to get sorted and it was. From flu to twisted kidney, endo, back op, whatever, there’s a few but always dealt with and I never went and felt I’d gone for nothing. Wether it’s postcode or nhs changes I’m stumped and outright disgusted in all honesty. Private is an out there option but not financially practical presently and neither is moving back to London, I think I’ve had the patience of a Saint, I’ve let pandemic by not having symptoms seen , biding time and for what. I don’t want a disease, I don’t want anything but something is going on and if not a disease then what. I feel like telling them to take an educated guess for Christ’s sake but don’t treat me like I’m a worthless idiot. If they see nothing then why repeats for AI disease in bloods. On ridding me another lot of bloods for disease requested. Why? 🤷♀️ Musculoskeletal symptoms, not clinically further specified skin swelling and effervescent red skin rash.
Only last week and in writing to doc dermy said they can see nothing on my skin at all. They won’t even look at my skin bumps 🤷♀️
I give up. I will see how things go and if bad again will get taken to out of area hospital , I don’t know what else to do .
Found ya 🤗😹Honestly I don't know what to say!! It's like you've become invisible or something Stiff..I'm so sorry you're feeling so deflated..understandably so!! 😠😤😠😤
As u know my appts have been cancelled to the end of this year n the beginning of next and I'm on an active treatment programme!! But I am on meds and just managing by myself..however I don't think I can reduce pred any further until someone increases the methotrexate!! It's so frustrating!! 😠
So now it's depression..so have they referred u for assessment by mental health team? I bet they haven't..you're being fobbed off with fibro.. depression n all sorts!! I'm angry for u!!
Sounds like u do need to take a breather for a while but I'm hoping that u won't give up completely Stiff..you clearly have something going on that's unique n out of the ordinary which has doctors scratching their heads..can relate to that totally. Sorry for late reply 🌈😽😽xx
Thanks KK, I can put up with waiting to a degree , I think it’s taking the ……. Now this long, but it’s what I’m told at appointments and then what’s written and followed up or not that disgusts me. I’m discharged from dermy and happily so, nothing collaborated and if no answers do be it , but you wouldn’t believe the happenings 🤬Why discharge me with forms for more bloods to include ctd, if I’m depressed and referral to university hospital . I no longer feel im crazy, I think it’s them, they are wasting time and money of the nhs, by not treating people properly, listening , seeing examining and further testing. I was mortified yesterday getting copy of letter and phoned ent again and have an appointment there this month, guaranteed unless anything drastic was to happen. I feel some understanding and interest there and at least my face will be seen if not all else dealt with and to push gp to refer to rheumatology on neuros request before he left. Still waiting for take over neuro appointment 🙈
I shan’t give up now, I can’t until I’m offered some kind of answers of care , things haven’t and aren’t going to heal themselves obviously ,or I wouldn’t be this way .
I feel stronger despite the demoralisation and bewilderment and more determined the worse things get , so yep breather and gorge on I say , maybe with recorder in hand next time .
Oh Stiff what a rubbish (stronger word required) situation for you. I'm not surprised you're fuming. My god it's so annoying when everything gets put down to stuff we know it isn't but can't prove it. Prove I'm depressed...Prove you're not! Prove I've got fibromyalgia...prove you don't. I really feel for you and reading your message was like a diary of my own.
What are the next steps for you? I've had a sulk for a couple of days, now I'm back to banging doors down. It's hard not to take no for an answer when you're repeatedly told you're not ill, just crackers isn't it? We've got enough of a battle on our hands being so rough, we shouldn't need to fight another just trying to get help. Even no answers or explanations would be tolerable if we felt validated, heard and were helped in some way I think? Well, it would be a start for me anyway. I'd be happy trying a drug without having a diagnosis label. If it works, great, I don't really need any more than that!
So lovely to meet you. Lets share successes and try to work out the way forward between us. Take care of yourself and keep smiling! xx
Sorry for delay in reply.lovely to meet you too and sorry you have a rough journey of your own. For me symptoms acknowledged but no answer for as not investigated fully, one thing said then another, no examinations or face to face despite urgent referrals and symptoms sEspecially face continuing and IF not AI then why nothing else considered no referral to any other specialist when so much affected. 🤷♀️ Where do I go from here? Who knows, downhill I guess. I just don’t know, I’m pig sick of it all to be fair, I’m sick of feeling my body for the past few years and knowing I’m in it, when it should just be my casing. I told dermy that too and said I’d welcome any of you to come live with me for a while to see what it’s like to see the symptoms which you don’t see as I’ve only been seen twice in 3 years of it by you and not even seen the neuro.
I have a gp with no care other than looking at what the computer says, interest from a neuro who then left the trust, awful rheumy consult that has I’m sure caused this merry go round, a dermy who seems more confused than I am and ent who it is out of his area but who saw and was compassionate and caring enough to try to help, and a facial specialist who see fit to urgently get me seen but to no avail. Add to that a pandemic which has caused telephoned appts to become the norm, that’s if you can get through or trusted your doc enough to see them, people with more urgent needs backed up to the hilt and you list somewhere amongst all that.
There are good and bad in nhs , when you’re tied to one hospital and like mine two rheumys for that hospital and few staff your stuck, a doc who won’t cost her surgery money and refer you, not even to an ophthalmologist when your eye is swollen and dropped shut and face tongue swellings and skin probs , that a dermy won’t look at beyond face mask, then what do you do 🤷♀️
Hydroxychloroquine helped but not enough but hey I’d settle for that even when diagnosed palandromic rheumatism. From my investigative readings on the subject, symptoms do fit but more besides. I was also told you can have more than one thing you know. So do I have that and more besides, is it progressing to rheumatoid or lupus as it can because second rheumy said no and stopped medication just a few months after starting. What’s causing facial probs? So many unanswered questions. I had to investigate or too as diagnosed given drugs and simply told to google it.fibro not even mentioned now 🤷♀️🤣
If you or anyone knows a way forward I’m all ears, it has to be practical though, I’ve not worked for long time, pandemic and health probs have hit hubby’s work though thankfully still carrying on all be it hard , well that and brexit, the building trade have been hit hard I can tell you.
So sorry to hear I’m not alone in my journey experiences, it’s heartbreaking to hear of so many others. I wish you all the best and you take care 🙏🤗 my smile will return 🙏👍and no doubt we will speak again, hopefully it will be that you’ve seen a good ‘un🙏🙏🙏x
I think this is a major issue, l too have experienced this. My own experience was that I had an NHS appointment where I could feel the pressure to get me out of the room, the clinic was running late. I then had a private phone call with the same consultant, he was really helpful listened and gave me plenty of time. We are all human, speaking to people l know in the NHS they want to do a good job, but in a sense spend their whole day 'failing' in that due to capacity and time pressures. This is why the turnover of staff in the NHS is so high. Only yesterday I was talking to a paediatric physiotherapist, she said since the pandemic things have got even worst. Not only are you trying to get the waiting list down and working over your hours but you are also getting abuse for not giving the care that you want to give. This doesn't make it any better for you as a patient. The UK spend less than any other European country on healthcare, we have less doctors and nurses, than all countries except Poland, we have less beds per capita, except for Denmark and Sweden, we spend 9.7 % of GDP most countries spend at least 11,%. Source Kings Fund. This doesn't help when you are sitting in a clinic feeling that you are not being listened to but perhaps gives some context. I have taken written notes with key issues to appointments, a timeline with symptoms, and a list of my medications to give to the doctor to speed up the basics so we have time to talk. Take care everyone, l am having a rough day, and so above is a bit of a rant against the underfunding of the NHS.
I'm so sorry you're having a rough time of it and don't blame you for being so cross. I completely agree with what you say and know there are many doctors out there who do just want to be doing a great job. But here comes the but... I don't think our problems are limited to the NHS and its capacity or lack thereof. There are numerous examples I could give over the years but I'd be here a month writing them (in summary, multiple misdiagnoses, poor bedside manner, 'process maps' being followed in the hospice when my mum went in for her last days rather than assessing her needs - I found their actual instructions on google. Missed infections and also, an occasion when I was a HCA in hospital and assisting a consultant who referred a patient for a scan. His words when she left were "I don't know what's wrong with her. The scan won't tell us anything but it'll be a good 3 months before she has it so don't have to think about it again for a while" - hand on heart, that happened).
Anyway, the reason I don't think much of it comes down to this in many instances (aside from past experience) is that I was seen privately and still fobbed off. I have insurance but he only saw me to the extent which had already been authorised. That bit may be coincidence but, as with so many others on here, the first meeting went well, I felt listened to. The second appointment was "yep, all the clinical signs of something nasty, but boring bloods. See ya". And that was that. All these doctors that want to do the best for their patients, are all part time NHSers and tend to hold a variety of private clinics because insurance companies pay more. So are they all about helping or is a lot of it about the cash? Don't get me wrong, nobody works for nothing, nor should they, but if asked to be entirely truthful when it comes to their desire to help people over making a bit more money, I wonder what the answer would be.
If only things were a little more straight forward! Lovely to meet you and sending you so much love and support xxx
I had to wait seven years for diagnosis and very little was known beforehand about Lupus in the UK. I remember obtaining a book from America and they were really tuned in to this condition. My journey began with seeing hematology due to my white count being at critical level, as many of us are, then some years with a kidney transplant specialist with an interest in Lupus. . Having a bone marrow test to check my white blood cells of all types were still being produced, thankfully yes they were. Then being transferred to a new Rheumatologist, in this clinic I have seen eight main consultants and several of their side kicks this can lead to discontinuity in treatment as each had a different way of thinking and wished to pigeon hole me into a specific category rather than take a holistic approach.
There was one consultant who always stated that his Lupus patients knew more than himself, I would agree with this.
I have many conditions and often feel like a medical dictionary.
I feel that all consultants, whoever they are, should treat their patients with empathy and care. I feel one of the problems you face and the reason we see so many consultants, is that many hospitals cannot keep their rheumatologists and once in the specialism they soon move upwards or on to another position.
Hi Willow, thank you so much for your message. I think you're absolutely right in everything you've said. Im guess it's the same with anything, the good ones inevitably go on to do even greater things. All I know is I feel like a total hypochondriac but I know I'm not. Just got to keep pushing to find someone who will listen.It does seem a holistic approach might be a better option. Rather than trying to assign a label to it and dismissing it entirely if a label doesn't fit, look at the likely cause (be it autoimmune or otherwise) then try and treat that. If treatment works, fantastic. If it doesn't, try something else. What harm can it do in the case where nothing is definite? So many diagnoses and treatments are best guesses anyway and I for one would far rather be trying some first line treatment in the hope it helps even a little bit, than doing nothing and letting whatever it is rip through my body like a whirling dervish.
Sounds so frustrating. I to was told I must be depressed. I have never been depressed in my life. The only thing that makes be depressed is trying to convince practitioners that I'm not depressed. 😵 I'm so glad my consultant looks at symptoms not bloods as all were fine except borderline positive dsdna. She was convinced before the bloods came back of Sjogrens and then the bloods revealed lupus too. But I've been through a neurologist, an endocrinologist, a dermatologist, a clinical psychologist. Many GPs too. How many people give up and just cope with feeling like they do that have autoimmune conditions? Unless something really develops that's serious many of us sit for years feeling awful and the damage being done to our bodies increases. I've was actively searching for answers for 12 years. If you can get a face to face private appointment with a specialist in lupus do it. You often get an hour and a detailed history taken. Take notes with you as even an hour goes so quickly. I just highlighted mainly the predominant symptoms and then she asked about anything else that from her point of view would point to a specific condition. Go to a recommended Lupus centre or consultant from the website if you can one who doesn't rely on blood results as it seems they often come up negative and are renowned for doing so. Shame we have to fight so hard to be heard when we are often exhausted on a daily basis. Keep going.
Thank you so much DG. I'm on the lookout for someone who doesn't place all their weight on bloods. Easier said than done but there has to be someone. I've taken to photographing and videoing everything. The discoid type marks that appear when I have a shower (presumably heat related) and the amount of hair coming out in clumps. I have a phobia of loose hair, especially when it's when, so I spend most of my own showers squealing and wretching haha! I've even got my husband photographing my tonsils 🙈 sexy times! x
Goodness but I'm with you, selfying your rashes etc.. is not easy. Good on your husband. Although my Rheumatologist asked questions, took bloods, did a quick tear eye test and I got the primary diagnosis then and there. The bloods didn't help upon follow up as they were mostly negative. With some Rheumatologists though maybe pics whilst you've got symptoms might be good. I confess to taking and saving them too just in case. If I my hair thins much more I'm off to the wig shop. Hoping hydroxy helps with the hair thing and its just a temporary issue. 😀Hope your hair stops shedding soon.
I can offer up my experience in a European country and in the US as a comparison. I was found to have developed bradycardia in my early 30s. So I was sent to an internist. She examined me fully and noticed big boil like painful lumps on my chest which she said are not normal spots. So she ordered a whole barrage of blood tests. She saw I tested positive for anti dsdna and ANA and referred me to a rheumatologist telling me she suspects I might have lupus. The rheumatologist ordered more blood tests and a lip biopsy. She saw I had anti SSA and anti Ro and the biopsy came back at the severe end of the spectrum. She asked me about my hands and circulation if they get cold/go blue (I said sometimes in winter but not that often). She asked me if I get tired more than usual or have a stiff neck in the morning (I said yes but I thought it was because I had a lot on and was stressed and it wasn't anything so severe to write home about). She then diagnosed me with sjogren's and developing lupus and sent me for eye tests as I was put on hydroxychloroquine.
So my diagnosis journey:
In another European country it took 6 weeks for a diagnosis of sjogren's with developing lupus.
In the US when I told the rheumy I had been diagnosed with sjogren's and developing lupus, he retested my bloods and told me he is just going to put me down as sjogren's and lupus as anti dsdna is pretty conclusive. So it literally took two weeks.
When I returned to the UK the bad local rheumatologist (see previous post) became obsessed with whether I had lupus or not (he accepted I had sjogren's) and tried to reopen the situation because a diagnosis in a european country and in the US was "not the same as the NHS..." and "he didn't have time to read through the medical notes of the doctors I had seen in the US and Europe" so he wanted to start from scratch and make his own diagnosis. After starting from the beginning again (and ordering far fewer blood tests) he tried to fob me off with fibromyalgia despite having zero symptoms and my blood tests all being positive. He put me on too low a dose of hydroxychloroquine and my kidney function started to get worse. Only after I complained and got referred to a specialist centre did things get better for me in the UK. The specialist centre looked at the notes I brought from abroad - the results of blood tests, the lip biopsy etc. They did their own tests which again showed the same thing - I have consistently always tested positive and they didn't relitigate the diagnosis, they said it was clear from past notes and recent tests and they started treating me and monitoring me. Things have been a lot better since then.
It's worrying really how varied outcomes can be isn't it? Would love to know what the outcome would be for everyone on here if their cases were reviewed by a specialist in different countries and a summary of how the Dr had reached their conclusion, along with their recommended treatment. For such small world these days and how easy it is for these specialists to collaborate globally, there's a heck of a lot of disparity. It's always been something drummed into me since I was tiny - don't judge others by your own standards. Reckon that UK rheumy of yours could have taken a lot from that. Just because his diagnoses can't be trusted doesn't mean everyone else is as incompetent.
So pleased you got back on the right track eventually though and hope it all stays that way for you! All he best x
Hi Natasha, I share your disappointment, frustration and add despair. My 12 year journey has been fraught with indifferent, uncaring Rheumatologists who have been ridiculing, dismissive , inconsistent, contradictory and negligent. In the years my diagnosis has changed so many times. Initially I was diagnosed with Lupus in 2009 my bloods were strongly positive. APS was added, then Raynauds, then Spleenamegaly. Then a new Rheumatologist said not Lupus but Bechets. Then they diagnosed me with Low Grade Lymphoma and told me I had four years to live. I got a referral to a Lupus Centre of Excellence. They confirmed Lupus. Hoorah on treatment and my Lymphoma diagnosis and prognosis was removed. Then when I went for my 6 month checkup, the very same Rheumatologist said not Lupus but UCTD. I was distraught and refused to see another one for two years until I got sick. The new Rheumatologist never examined me once in five years. He saw me every six months and honestly he changed his mind every time but mostly it was definitely Bechets, probably Lupus, definitely Fibromyalgia. At least he kept me on Hydroxychloroquine and courses of steroid and referred me to other specialists who actually helped me far more. Then he left and I saw a new Rheumatologist, a so called expert in Lupus. He upped my Hydroxychloroquine to 600 mg. After a few weeks I started getting visual problems so went to the Optician. I was sent quickly to the Macular Unit as I had developed macular oedema. My GP did not want to know, the Ophthalmologist said that it was not bad enough for him to see me. The Rheumatology nurse got me an urgent appointment. I expected empathy concern but got scorn. He told me the only thing wrong with me was Fibromyalgia and “ hysteria” and if I got sick I would prove him wrong?It devastated me. I began to wonder if it was my fault that I was sick. Was I a hypochondriac? The next Rheumy said MCTD. The next one said UCTD and definitely not Fibromyalgia . Then 18 months ago a new Rheumy rang me. He apologised that the service seemed to have been able to agree a diagnosis and he said he wanted to help me. We would start from scratch he said as soon as he could get me into clinic. I had hope again. Then two weeks ago ( after a strong letter from my Respiratory Consultant) he rang. It was a five minute phone call. He was Curt, accused me of refusing treatment and put the phone down as I was still talking. Sorry this was so long I just wanted you to know that sadly many here have experienced the very same lack of care that you have. I honestly cannot provide you with advice as I am struggling myself but I seriously hope that you can find a Rheumatologist who has the decency and professionalism to actually help you xxx
Hello. I’m trying hard to discern your system NHS in contrast to the US where I am. I’m reading the above mentioned articles as well as what I google. I know the basics of NHS vs. privatized health. AfterReading these posts, despite my own
American struggle with the same issues, yours seems more distressing and discouraging. Are you deliberately handed off to other doctors or do you get to leave
And find your own? And all the phone calls and letters written and one post a Dr actually saying he does not have time to
Read something? What arrogance. Now
I have had some very very unfriendly and
Misdiagnosed physicians. But at 63, not sure I’ve had the same “quality” of bad
I don’t think there’s a simple explanation there’s good and bad in all and everywhere just feels sometimes like good are getting less.there’s also a postcode lottery and nhs does better in some areas and not so in others, in relation to both postcode and specialisms. The nhs has been brilliant in past but it’s losing some grip and I think people never had as much to complain about before or didn’t speak out so much but I’m glad they do now, no one should suffer in silence. Arrogance snd unfriendly is not nice but in scheme of things I think most of us can put up with and just pity them but the experiences of many be it dismissive, uncaring or reasons being funding , overworked or just arrogant is just not acceptable especially in what is meant to be a caring profession. I think there’s problems in all and sadly I think the nhs will fade out as it’s slowly happening now. I have no experience of your system but I know it’s tough in its own right too, but we can be forced to seek help privately which for many is also a choice of health or living costs. Sorry I can’t explain but that’s my take on it 🤗
To be fair the NHS is usually brilliant so this isn't an NHS problem. I personally believe it is a problem with the way rheumatologists are trained. Which is a problem with the British Society for Rheumatology.
The main difference between the UK and the US system in terms of choice is that if you are unhappy with a doctor in the NHS you have to fight quite hard to see another one - you need to kick up a real stink - or you go private and you pay.
That being said all healthcare is free at the point of need whereas in the US if you lose your job or can't get health insurance you have to choose between paying the rent/mortgage or paying for healthcare treatment or taking out a loan you will be paying off till the end of your days.
So having experienced both systems I'd still take the NHS over the US system any day - worst case scenario here we have to either complain extremely loudly to get a different free physician or we pay to go private and choose our own doctor but at least we will always be able to have healthcare. The fact that I saw people with emergency health conditions choosing to use an uber rather than calling an ambulance because even with health insurance it would cost them $800 convinced me the NHS is a total blessing.
The frustrations you are reading about here are about the way UK rheumatologists are trained. Not about the healthcare system in my opinion.
The quality of the doctors I had in Europe and the US was far superior. But in the UK we have a long history of arrogant medicine where the doctors talk down to the patients. That hasn't been the culture I don't believe in either of the other countries I was in. Patients were viewed as partners in their healthcare. They were listened to, things were explained, broad tests carried out etc.
The other plus is if something goes wrong you have to sue in the US whereas in the UK there's an entire joined up regulatory system that you can complain to for free. I remember I visited a cardiologist in my early days in the US whose office was her apartment and when the echo didn't work she said not to worry she'd guess the numbers!! That could not happen in a UK hospital. Of course I paid her and got the hell out of there and looked for a better cardiologist. But in the UK there are baseline standards which a private healthcare system doesn't cater for.
Well thank you Insomniacette. That was a Good basic summary and I appreciate the time you took to answer it. I have 2
Replies. One is a question. How are rheumatologists trained then as this seems
To be the consensus here and receiving
Substandard results?
Second. I’ve lived here all my life and our
Heath system does/ is changing. In its course, I think it is headed in the right direction to give healthcare to all. Incidentally I am a conservative saying this
So plz no one take offense. What you
Experienced is ghastly. I had a root canal
Done about 15 years ago. She put headphones on me and music very loud
And thought I could not hear anything. I
Was grateful she could take me in the evening. She came highly recommended.
What I heard was her arguing with her husband very ugly as HE was assisting her. He is not a dentist but an attorney. I was
Terrified in a dentist chair and there was no escape. The ending to that is not pretty.
I tell this to you as one of countless realities in our medical world. Good Doctors. Bad
Doctors.
Last, your story about the Uber and ambulance is too bad. What’s worse is
The media loves to focus on the negative
And there is no more journalism so a lot you may hear or read is untrue. So many challenges face our medical system as our society is divided and more violent. Throw
In Covid/ delta variant and suddenly no
Other illness exists.
Thanks. I don’t want to hijack this thread. It is very informative. Best, Titters
Rheumatology consultant s are good. You need a referral from a gp . You shouldn't believe everything you read about diagnosis time and negative comments about rheumatology consultant s. They are the only ones qualified to diagnose. Not everyone who thinks they have lupus has lupus. This is a chatroom only .
You’re quite right, this is only a chat room and that not everyone who thinks they have lupus has lupus. However, to say not to believe everything implies people are dishonest and that I will not agree with. People are not liars 99.9% of the time. Their experience is as valid as the next persons.I am not a liar. I believe I have an autoimmune disease, with good reason. The rheumatologists I have seen, I feel, have been dismissive.
I am not a hypochondriac. I am not deranged. I am not insane. I am not melodramatic. I am not lazy. I do not want a label.
What I do want is for someone to take me seriously. My body is not functioning as it should do and I know that because it’s doing what it does periodically. Pain so extreme I don’t know where to put myself, covered in bruises, fingers and toes blue with cold, tendons visibly and tangibly inflamed, lymph nodes like broad beans, tonsils covered in white spots for four days every couple of weeks, a face so red I’m asked constantly if I’m sunburnt despite not having left the house in days.
I have a positive ANA - sometimes. My liver enzymes are 5 x normal levels.
But it’s not autoimmune, it’s fibromyalgia apparently. Even though fibromyalgia doesn’t cause all those things.
I can’t continue to go on in this much pain. But what choice do I have other than to ask for a second opinion which, incidentally, will actually be my 5th. I’ve already seen 4 over the years. Are they all wrong? I guess not. But am I wrong? I know better than anyone else when my body isn’t doing what it’s meant to and I can read so I know their diagnosis doesn’t fit. It feels like a fob off because from a histology perspective I don’t fit the mold. Symptomatically I hit various autoimmune diseases and positive ANA results coincide with flares, usually negative again by the time I see anyone.
I emailed a rheumatologist the other day to ask for help. He said he wasn’t able to but his colleague may be able to, and copied him in. I thanked him. The colleague replied saying go to my GP. I was about to thank him when the first chap accidentally copied me in to his response to the second. He said “hope that didn’t waste too much time”. You say rheumatologists are good. Is that good? It made me feel pretty awful I can tell you. It made me feel like a waste of time.
So whilst you do make some valid points, please, from someone experiencing the things you say don’t happen, think before you post. You have single handedly accused everyone having this experience of being invalid and they most certainly are not. Sadly, it is those with views like yours causing the problem and invalidating the very real and horrific experiences people are having. On that basis, may I politely suggest you reflect on your opinion and refrain from judgement in future on things you do not understand. Until you have walked in that person’s shoes, you are in no position to have an opinion.
One member had a great way of approaching this problem. She advised someone like you to ask the doctor why they didn’t think she had lupus. I think that would be helpful to you. You have reason to think you have autoimmune disease. It is their responsibility to explain their reasoning.
Please don’t give up. I was like you. It took me thirty years to get a diagnosis.
I have also experienced gaslighting at the hands of rheumatologists (dismissal of symptoms and even evidence, derision, open hostility - gaslighting to the extreme in cases). Eventually diagnosed with Lupus and, most recently with psoriatic arthritis (the last five rheumatologists missed that, although it was very clear (even with visible evidence) if any had chosen to look see).
To cut a long story short, I start seeing my 6th rheumatologist at the end of August and all indications seem good (as far as you can tell after one private appointment). I'm hoping that I can eventually - at long last - get on an appropriate treatment plan and begin to get back some quality of life - with less pain.
I'm so sorry this is happening to you. Being copied on that email must have been devastating - what a shocking insight into what some (unfortunately far too many) rheumy's think about their patients - and say to each other about us (I suspect that's why so many people have trouble getting an unbiased second opinion).
I'd love to say more to try and support you but having a bit of a flare right now - I just felt I wanted to support you and let you know that I agree - there are some terrible rheumatologists out there (I've met some) but I also know that there are some good ones too - It’s just a matter of finding them.
LupusUK can perhaps point you in the right direction rheumatologist wise (though I've discovered that not all rheumy’s in the Lupus Centres of Excellence bear any resemblance to excellent). You could also put up a post here asking members to personal message you if they can recommend a good rheumatologist - one who looks at the whole person and not just blood results on the day!). I've started that by sending you a PM.
We're more than a chat room, as you well know. There are those here who 'saved' me when I was at rock bottom. They supported me and made me believe in me, gave me the strength to carry on seeking a diagnosis and the care that should go with it.
Please keep posting and let us know how you get on. Take care and keep safe x
A big Bravo to you - and Tattyasha - for having the guts to stick to your guns and knowing what your body is saying to YOU, the problem lies with (some/ many) Rheumy's who just don't listen to the signs/symptoms, they only take heed of the blood results.
Oh MEGS53 - not you too! I'm so sorry. So many of us.
I do wonder when it was that doctors stopped listening to their patients and stopped treating the whole person. They seem to spend more time staring at their screens - and I'm quite serious when I say that evidence based medicine is killing us (and I bet you'll get exactly what I mean).
I consider myself lucky that I've only had one awful rheumy (who did lots of tests, but was only really interested in the blood results. Told me I had a touch of OA when I actually have almost total destruction of the meniscus in my knee, which has nothing to do with OA. Dx'd me with ME/fibro and said I should talk to a psychiatrist....I'm sure you get my drift.
And one particularly nasty hepatology registrar who, in not so many words, told me my health issues resulted from being a secret alcoholic!
Other than that, all the Consultants say that there's >>something wrong<<< but with nothing to see in the way of blood antibody markers (other than high levels of parietal cell antibodies), they adopt a sticking plaster approach.
Maybe that's the best it's going to get, but I just know there's a unifying cause for my health problems. Surely, one person can't be this unlucky??!
Don't get me wrong, I don't need a label and I'm lucky that most Drs do take me seriously, but they refuse to trial me on any DMARD and insist on giving me sticking plasters. I'm currently on the waiting list for a partial knee replacement to remove the torn meniscus which should allow me to walk without pain. But I know - and the 3 surgeons know - that although this should help, it's not a cure-all in terms of being able to walk properly again.
My GP has recently referred me to the 'spinal team'.
Hmm…shocking MEG53. But I bet being a secret alcoholic helps 🤦♀️😡.
Terrible knee issues et al aside (though not that they should be)…
Just wondering if anyone said anything about the high levels of parietal cell antibodies? Often associated with Pernicious Anaemia but can give false positives. Have you had blood test for intrinsic factor autoantibodies (but again, 40%-60% of those with PA test negative, so negative does not (cannot) rule out PA - though a positive is conclusive for PA.
Have you had your serum B12 levels tested (though lots of issues with this test and B12 deficiency can be present even with so-called ‘normal' serum B12 levels).
Also wondering about potential B12 issues because of your referral to the 'spinal' team. B12 deficiency (and there are many causes other than PA) can cause something called Subacute Degeneration of the Spinal Cord - where demyelination of the spinal cord occurs due to B12 deficiency. If you have neurological symptoms and think think B12 deficiency may be a factor, then urgent and intensive treatment with B12 injections is required immediately to prevent irreversible neurological damage (every other day injections until symptoms stop improving - sometimes for many months/years even - but unfortunately not many GP's know this)!
The symptoms of B12 deficiency overlap significantly with the symptoms of autoimmune disease. So much so that when I became increasingly unwell (again) I thought that my B12 deficiency was not well controlled - eventually turned out it was another Lupus flare (which had been present but undiagnosed for 30 years).
B12 'thing' may be something or nothing or something you’ve already investigated - but worth mentioning just in case. I would sincerely hope that it’s something your GP has investigated due to your high parietal cell antibodies? And investigated properly? And even if you do have an underlying B12 deficiency, that doesn’t rule out other underlying and as yet undiagnosed conditions.
Sorry I've rattled on about B12 deficiency - it’s as little understood, diagnosed and treated as many autoimmune disease - GP's don’t know what to look for or at, and dismiss many who are deficient - with potentially devastating consequences. If it’s something you want more information about feel free to send me a PM (and sorry Tattyasha for overtaking your thread).
As to the rant - grief, no apologies please - ranting here is sometimes the only thing that keeps us sane… and fighting!
You take care and keep safe also. Big hugs to you MEGS53 x
Ahhh, my GP has done tests re the GPC autoantibodies, but perhaps not in depth. I just don't know. Subacute Degeneration of the Spinal Cord is certainly a possibility.
I know you're an expert re PA and I'm so very grateful for your help. Perhaps we could continue our discussion by PM, so we don't encroach further on Tattyasha's post. But only when you have the time and energy as things are never simple where I'm concerned 🤯
Okay MEGS53. Agree..PM best idea so will await incoming. Just to let you know…having a bit of flare stuff at the moment so will reply ASAP when I hear from you (might be straight away, might be a tomorrow job…or the day after…but it will happen) 🙂🙃xx
I was given dmsrds they helped some but another rheumy told me not and stopped them and things got worse. How she decided that I don’t know as I’m the best judge of that and she hadn’t seen me before I started them.
Umm no not all Rheumatologists are good, in fact they have to be amongst the worst professional medics I have ever seen and believe me I have seen very many. Had you experienced some of the Doctors that others here have you would not say that. There is absolutely no excuse for rudeness, indifference and failure to assess adequately. Maybe you have been fortunate but please respect the fact that others here have not
No there is no need for being Curt and implying that people pouring their hearts out are being disingenuous or unfairly critical. If Rheumatologists were all fabulous, highly skilled doctors wouldn’t it be fabulous eh? Xxx
Rheumys can be good there are good and bad in all, good ones can be hard for many to find, not just rheumys, any specialist any person, but rheumys from peoples experiences. Being qualified does not make one good. No not everyone who thinks they have lupus do have it, the great imitator, but you can say don’t believe all comments on good rheumys. This forum is a place to chat and share experiences and I’m not aware that everyone has to have the same experiences to share , though many do have it seems.yes we chat here, I’ve not read anyone diagnosing anyone else, that doesn’t happen, we share experiences and knowledge. I’m so pleased you had a great rheumy who helped you 🙏 it’s sadly not the same for everyone though I’m sure they wish it was.
Not implying people are lying but opinion is different from fact
Sorry but…not all rheumatologists are 'good' as you say. Many general rheumatologists do not understand Lupus and routinely dismiss patients without understanding what they should be looking for - the signs, symptoms and even the clinical evidence. Nor do they take into account the lupus diagnostic and treatment guidelines published by the BSR (in a recent survey I believe many said that they hadn’t even read them).
The research papers on the link below (peer reviewed and published in various rheumatology journals) evidence the horrific diagnostic and treatment journeys suffered by some and also present evidence from those who had better 'journeys' (in all the ways we understand that):
It sounds like you had a tough diagnostic journey yourself and I see (from what you write elsewhere on the forum) that you now have a good rheumatologist and a multi-disciplinary team who work with your rheumy to deliver your treatment and care. That’s fantastic - and what everyone here would wish for every single one of us.
The fact is that there are both 'good' and 'bad' rheumatologist - and people often end up here when they are let down by medics - again and again - those who receive a swift diagnosis and appropriate care rarely have need for fora like these - unless they choose to come looking for fellowship and have a desire to offer support to others.
So, we have the LupusUk members forum (sorry but 'chat room' has some very dubious connotations)… where we LupusUK members (and others) congregate to share experiences, help and support each other with our many and various autoimmune conditions: and try to heal and repair ourselves and help others who have often been gaslighted and traumatised…by rheumatologists. Being here is often the route to ‘finding better' (for want of a 'better' way of putting it) with help from those here who have been through similar things.
I'm so pleased that you found better and are being taken good care of. Take care and keep well.
No I didn't have a tough diagnostic journey just complications from lupus and allergy to medications and i wouldn't be alive if it weren't for rheumatology. The majority of people on here are people with lupus and not qualified drs/ rheumatologists but people sharing their feelings and opinions. At the end of the day the only people who are qualified to diagnose test and treat are qualified medical doctor s treating each individual case of lupus as cases can vary greatly.
People here are also sharing facts, details of things that have actually happened to them: these are not opinions or feelings but facts relating to both good and bad clinical practice on the part of medical professionals.
I agree - medically qualified professionals are the only people to diagnose and treat autoimmune disease, including lupus. The issue is that far too many remain undiagnosed, misdiagnosed or simply dismissed due to lack of knowledge or expertise on the part of some medical professionals.
It is certainly not the case that members here try to diagnose others - with any form of autoimmune disease (been here some time, never seen that): it’s not what this forum is for or about, and all members recognise this.
I'm sorry but stating that all rheumatologists are good is your opinion and your experience, but claiming that that is a universal truth about all rheumatologist is, in effect, gaslighting those who have had different experiences (you are essentially saying that their experience cannot be 'true' because all rheumatologist are 'good'). I do recognise that this is perhaps not what you intended but nevertheless, that type of response is not helpful to anyone reporting bad experiences at the hands of a rheumatologist. It’s worth also noting that there are those in the forum who report dreadful medical experiences, which have led to them ultimately suffering long term organ or other damage which may have been prevented had they been appropriately diagnosed and treated when they first sought medical help.
The fact is that nobody should have to present with severe (or life threatening) autoimmune disease before medics will take them seriously and act - and reports here suggest that that happens far too often. It makes me so angry frustrated and sad when I read of the things that many have to go through - sometimes for many years - before eventually being appropriately diagnosed and treated.
Please believe me, I'm really pleased that you have a good medical team and so very sorry that lupus and the drug allergies has caused you to have such a hard time. And yes indeed, rheumatologists do save lives - as you say they saved yours. And for that, we all celebrate with you…and sincerely hope that you're able to keep and remain as well as possible.
Also I do know what it is like as I have been diagnosed with severe lupus been unable to walk and in and out of hospital high dependency units for 4 years.
You know what your experience has been. I am sorry you have suffered and are unwell. That said, it still does not give you the right to say others are not to be believed. It doesn’t...And yes I do very much understand the difference between fact and opinion.
I am sorry that whatever experience you have had of people has left you bitter and negative towards others, that is sad, but I choose to take people at face value and have no reason to criticise or disbelieve anyone unless I’m given reason not to.
There is little point entering into any further discussion. I’m not here for an argument, I’m here to get to know others, learn about their experiences, build friendships.
May I suggest if you do not find the content of this post valuable to you, you find an alternative. Life is too short to seek out negativity.
I think what @Philosophy1 is saying is that whether we think a rheumatologist is good or not is an opinion. We are entitled to those opinions. We may value the time they take in appointments, their humor, their responsiveness to calls. But there are ways to measure whether a rheumatologist is diagnosing properly, referring patients to appropriate specialists, or producing certain outcomes.
Many lupus patients can take years to diagnose. That could be because the person does not show enough symptoms or because blood tests were later positive. The reverse is not true. Because someone has certain symptoms and a positive ANA does not mean they have lupus. That is where the confusion usually is.
One lupus expert in New York said she spends a large part of her day in consultation with young women with positive ANA and her job is to reassure them they don’t have lupus. I wonder if she realizes how many of those patients still want to know what’s wrong.
That’s the whole point kayhimm you hit the nail on the head, it’s about care compassion understanding and professionalism it’s not wether you have lupus or AI it’s about answers explanations and help. Diagnosis is key to the patient but it’s about more than that .
If certain. The same goes for proving you don’t and proving you have, With certain reassurance. Adequate explanations and adequate investigations. Bloods and nerve tests 🤷♀️ No biopsies no complete physical exams, look at kidneys or images from various organs etc, no knowledge of symptoms when not asked. Of course people need answers, you have symptoms if it’s not lupus these people have symptoms and when/ if ruled out there needs be something causing. Doctors don’t have all the answers no, but to be a doc/ rheumy/ specialist of, to just have certain training yet with ever changing , new , rare, conditions/diseases then it should not be said well we don’t know everything, there should be care , interest and learning, an electrician has to sit regular exams for the ever changing new technology, docs should have to too, it’s appalling the stories of docs not understanding lupus, or any disease or condition for that matter, if just one of their patients has it they should make it their business to at least learn something of it or change the system so there’s specialist in all areas not just the big standard for which boxes they try to put people in. It is very important either diagnosing or reassuring not of lupus to be able to explain and reassure. To tell someone they don’t have lupus must be done with a degree of certainty, or you must help and understand symptoms, with understanding that it may well be if later shows in bloods if it’s not something else, but too many people are led to believe they are not worthy of that respect. I am supposed to have colonoscopy every 3 years because of family bowel cancer and having pre cancerous polyps removed twice having this. I’ve not had for 6 years now , but that’s not here nor there, but why then are checks not made like this for sufferers who show signs but not in bloods and why are clinical findings so important as a test and a test is only as good as the person doing it and any test blood or otherwise every patient should have a copy as insurance of failures for whatever reason . No one should have to ask for their own medical records, it’s their lives and health and each should be entitled to their own records. Sorry I’ve gone on ….. yes patients should be reassured if certain . A lot is not adequate .
Yes, what they say when things are unclear or stating who the doctor is who should take over from that point. Patients are sort of left in the dark or put in the fibromyalgia bucket and left with no treatment.
Not bitter at all telling you that a gp needs to refer you to a rheumatology consultant and that rheumatology consultants are the qualified people to help as this is a chat room is fact nothing to do with being bitter which I'm not . Making generalised statements of opinion about diagnosis and consultant s is opinion with no basis in fact . Hence the comment regarding opinion is different from fact.
It appears we may be at crossed purposes. Apologies if I have misunderstood where you are coming from. I'm simply responding to your comment that one should not believe everything you see and that 'rheumatologists are good'. I'm sure many are. However, like others have said, it may not be the reassurance they don't have lupus that they need. That's great, but if it isn't that, then what is it? Personally, I just want to feel better. The rheumatologists I've seen I've not found to be good because they've simply told me what I don't have and discharged me. My GP still feels it's rheumatological. Symptoms need to be addressed. Telling me I'm fine when I'm not and sending me on my way is not of help and I think that's where people are coming from.You are quite right that a Rheumatologist is better placed to answer questions than a forum. That said, it can be useful, when feeling unsupported by the Rheumatologist or fobbed off, or ridiculed, to seek comfort that you're not alone and identify alternative centres who may be better equipped to deal with your situation.
Why when an oncologist reassures her patient that they do not have cancer because the biopsy was benign they would never question that doctor’s diagnosis yet when a very well trained rheumatologist looks at all the evidence and decides that there is not presently enough evidence for a lupus diagnosis that is irresponsible?
If I have a mammogram five years ago that was clear but get breast cancer today I do not think aha I knew it I was being gaslighted. I realize that although I had no presenting evidence of disease at the first mammogram I have since developed cancer.
They do not treat cancers when there is NED( no evidence of disease) regardless of history and present symptoms and the same is true of autoimmune disease. Rheumatologist, like oncologists, need to have their patients meet very certain criteria before they are allowed to prescribe very dangerous treatments! This is not a doctor acting any way other than she should and to do otherwise would be reckless and grounds for malpractice.
I think the culture has double standards for rheumatologist than other specialists here.
I can’t agree that there are similarities in this instance. Cancer presents very differently and actually, oncologists are often subject to the same criticism. There are many, many reports of individuals not being taken seriously when it comes to cancer, either due to age (you’re not old enough to have cancer is a common one) or otherwise. In those cases, yes, absolutely the oncologist can be accused of neglect in the exact same way as a rheumatologist for being dismissive.
I feel you are missing the point people are making here. Autoimmune diseases are notoriously challenging to detect. There are double standards across all areas of healthcare - different doctors view and treat things differently. What people are craving here is empathy, understanding, an appreciation for the fact that if someone’s liver is failing, they are exhausted, they have a positive ANA, they have a permanently beetroot face and come out in strange discs when they encounter sunlight, they have tendonitis in every part of their body, they are in total agony... not to be dismissed. Not to be passed off as psychologically ill, but, evidently, physically ill. Rheumatologists are musculoskeletal experts so they have a duty of care to do their very best for patients they see in that situation and to provide adequate care.
You would not fob someone off who had symptoms of cervical cancer, you’d get biopsies or swabs tested in the lab. Much more accurate than blood tests which may or may not have highlighted a problem. My mum had stage 4 bowel cancer. The only test that picked it up was a scan. Rheumatologists can perform skin biopsies and scans but often don’t. Yet autoimmune diseases can be just as life threatening if not treated.
I appreciate what you’re saying but it’s a very basic view to categorise in such a way and one which leads to a very simplistic and inaccurate account of what people here are experiencing.
If the scans the oncologist order disprove cancer you are dismissed from their care. Same is true of rheumatology.
You mentioned very high liver enzymes that is where you should be focusing your efforts. Ask your gp to set up a visit with a liver specialist(hepatologist) and order an endoscopy to investigate why they are elevated. Rheumatology has seen your evidence and does not feel they can offer you any more assistance since you presently do not fit diagnostic criteria. This does not mean you need to stop seeking answers but start with the right specialists.
I have pondered this. You are absolutely correct about the doctor’s motivation. It is considered just as remiss for a rheumatologist to give out an incorrect lupus diagnosis as a neurologist to diagnose multiple sclerosis when it is something else.
I think there are some nuances, though. Autoimmune diseases can be disabling for the patient with vague and confusing symptoms. I remember just losing hope. Since I was given diagnoses of multi-system virus and subacute thyroiditis, which didn’t have treatment and seemed to go on forever, I just wanted an illness that could be treated. There was no internet and I knew nothing. By the time I was diagnosed with undifferentiated connective tissue I was sad but relieved - the relief was to know what was wrong and have a possibility of treatment. In my case just recognition of the cause of rashes and feeling sick during sunny vacations was huge.
With the internet things can also go in the other direction. People can read that achy joints, tiredness, and red face could be lupus. It’s not. As you said, doctors have to know a patient has autoimmune disease. That takes skill and time. We hear so many people with positive ANA and negative ENA told they don’t have autoimmune disease. I wondered about that. The research done indicates people with autoimmune disease almost always have the specific antibodies. Otherwise, it is considered by rheumatologists to be a false positive. So these are the nuances.
In the medical community rheumatologists are respected for their diagnostic skills. They know when they go into the field that they will be called upon to diagnose these difficult diseases. They are going to miss sometimes. People who look like they have fibromyalgia will go on to develop lupus. As you said, they can’t treat if their isn’t enough evidence. The risks are too high. They do try to catch these diseases as early as possible.
I do wonder whether there is a better way for rheumatologists to explain their findings to patients.
As we only hear one side of these cases, the patient’s side, I do not really know how the rheumatologist handles the news. The truth is really never in the telling.
Personally as someone who used to trust blindly, it was obvious (and shocking) to me that the local rheumies had it wrong. I'd been under the care of three other rheumies in two different countries (one a global expert) who had been treating me successfully for years. It was only when I came into contact with this woeful local rheumy team that things got worse. Thankfully escaping to a specialist centre saved me and I'm back to feeling safe and like this illness is under control. So I think each story is individual. My story isn't about how I felt, it's clear from factual observable and comparative evidence by examining the care I received from the local rheumy vis a vis the care from the other rheumies who had been managing my condition successfully as well as an examination of the clinical guidelines of standardized treatment and monitoring of the condition that I recognized was just not being done by the local rheumy. I researched the guidelines because I doubted myself. But I knew that for the first time ever despite being on hydroxy for 6 years the local rheumy told me I should go to a high street optician and I wasn't referred to an optical specialist (the first thing they did when I moved to the specialist centre was refer me to the optical clinic at the neurology hospital and I'm now on a yearly appointment roster as I was before), I wasn't asked to provide a urine sample throughout the time I was under my local rheumy (again when I moved to the specialist centre the 6 monthly urine testing resumed alongside the bloods). I didn't ask for these things at the specialist centre, they did them as standard (like the rheumies I saw abroad). So I don't think my judgment that my care was poor under the local rheumy team is just opinion. To top it off the decision the local rheumy made to lower my hydroxy dose was deemed wrong and as soon as it was upped to the correct level for my weight I started to feel better.
At the time I politely asked why my treatment was different to what had been done before by a number of rheumies and in the guidelines and that I was concerned. The local rheumy got aggressively defensive and diagnosed me with developing fibro and sought to discharge me that's when I took action. So I do think we have to be careful at thinking or implying patients are always arrogantly self diagnosing. I never wanted this diagnosis. In fact I went for a private second opinion at the London lupus centre when first diagnosed in Europe because I didn't want to be diagnosed! It ended my career. I wanted the diagnosis to be reversed. Sadly the private rheumy confirmed it and I had to accept it and then start treatment. Then an arrogant local rheumy felt he knew better than the three rheumies who had been treating me abroad for years and the second opinion rheumy from London and wanted to start rediagnosing me from scratch. I went along with it and trusted him until I started getting sicker and was noticing he wasn't doing standard stuff others had done. I waited far too long and it took a lot of disillusionment, despair and encouragement from this forum to get up the courage to tell him I wasn't happy with how my care was going and ask why certain tests were not being done. Leading to him trying to label me with fibro and discharge me entirely.
And I should add, were it not for the wonderful people on this forum I'd be discharged right now, getting sicker and probably put on anti depressants or anxiety meds until my kidney failed and someone took note again and questioned the judgment of the local rheumy. The folks on here believed me and encouraged me to voice my concerns and the moment I did my GP listened (I had a good GP who knew me since I was a child and knew I wasn't 'hysterical') and then another independent rheumy vetted my concerns and assessed my file before allowing the referral transferring me to the specialist centre to go through. The power dynamic is on the side of the rheumy, it takes a lot to challenge, I never wanted to, I was forced into it as I was getting sicker and became more frightened of getting sick than of pissing off the rheumy. But the whole time I went through this process I was anxious, crying and terrified that I wouldn't be believed and would be left at the mercy of a rheumatologist who by now despised me. I was very lucky I was believed and listened to as the local rheumy was clearly trying to undermine me. Patients should be listened to and their concerns addressed. Both sides aren't equal in this process.
Some of us are just seeking decent consistent care and monitoring so we can continue to live our lives, work our jobs and be our best selves in spite of the shitty health card we've been dealt.
I will say this I've experienced 6 rheumatologists in all, 1 in Europe, 2 in the US and 3 in the UK (two local and one centre of excellence). Four out of the six were excellent. The only bad experience I had was with the rheumatologists in my local hospital in the UK and they weren't just poor they were atrocious. I'd not experienced care like that before and because I had a baseline of great care before, I was able to recognize it was poor. The centre for excellence is brilliant and I feel I'm in good hands now. But my experience with my local rheumatology department has left me much more open minded than I was and more willing to believe there are some poor rheumatologists out there. And the research by Melanie made me think that my local experience isn't that unusual sadly. Although I wish it were otherwise. Certainly not all rheumatologists, but it does seem there's a problem. Or at least that's my take. Also it's true some people might suffer symptoms but not qualify for a lupus diagnosis but I still feel those people should be treated with dignity and respect and have it explained to them kindly. That doesn't seem to be happening in all cases which is sad.
Whatever the case, we're all in this tough old boat together. I live in hope that a cure will be found and one day we'll all be free of it! Sending you all love.
Beautifully put! Would you mind sharing which centre you’re at now please that you rate highly? I wonder if we could all start a positive trend by sharing the places where we have positive experiences. When we’re going through tough times it’s definitely the positive bits we need to hear to lift us up again and give us hope all isn’t lost.
You are so right. And if symptoms of but no lupus diagnosis then maybe investigate what it IS or have interval check ups as many show with bloods later but symptoms ignored until this. The dignity and respect is much needed and should be standard practice.Best wishes x
Thank you Tattyasha for starting a good conversation. Even though I’m An American we all to whatever extent as y’all Say, “get fobbed off.” Here, unfortunately
What has happened since Obamacare, is
Health insurance will usually pay for a 15
Minute consultation. I live in an area where
Healthcare is random. And finding specialist is almost impossible. Comments
Regarding our system of privatization needs some qualification, if you don’t mind.
Many Americans think it is their ‘right’
To choose their own Dr. They do not want
A system that appoints a physician for them. That being said, insurance companies
Give you a region or what is called a network of available physicians covered
In your insurance plan. For instance, my
Spine surgery covers 80% of the cost. But
I went out of network so only 70% of the
Cost was covered. This example has insurance companies calling the shots and
In the last 10 years gotten worse. And important to note, insurance companies
And doctors offer payment plans. Most of the expenses except for 1,000.00 dollars
Was paid for by us after the birth of our first child so yippee had number 2.
I will try to be brief. All people may not have a job or health insurance but most
Are covered through Medicare ( as my
Husband retires soon that’s what I will
Be on at age 65. ). Medicaid is health insurance for very poor. I have no
Experience with it other than to say some
Gruesome stories are true; some are not. These are Government Agencies like your
NHS in that it is funded for the person but
Not all of the cost is covered.
Funnily enough, the comment someone made about selling their house or not paying their mortgage In order to get health
Care I’ve heard more than a few times and
It is from European friends. This situation has happened. I have no doubt. But to
Generalize it into a population of millions
Is unfair. Each state in the US has its own
Legislature. It’s own State laws. Overseen by the Federal Government. And I simply can not say enough about faith based organizations standing in the gap for millions of other Americans during times of exceptional trouble/ hurricanes, tornadoes,
Floods etc. We are not Hollywood! We are
People helping people.
Last I’m going to make an incendiary comment that supports Philosophy’s
Comments ; however in a different paradigm. The system, no matter what it
Is, is historically demeaning to women. We
Are as Freud said, “hysteria” hysterical
Born from that word. From the moment we
Walk in we are perfumed with emotional bias. I’ve lived it in my country and you
In yours. I learned from a book years ago
To put on some professional clothing, do
Not cry and do not complain and do not show emotion. Speak only facts. Don’t
Use opinion. Bring research but bring it out
Only if it’s useful. Do not talk of the internet
Or what you googled. ( I wear my bifocals)
Sad dear women. It is our lot. There is no
Reason to argue that it’s not like that with everyone. It’s not. But in my experience
It is in most. I traveled 2,000 miles to find
A Doctor. And yes! He’s in my network. 😊The best of luck for all of us, no matter where we live to find the best medically trained and intuitive physician we can find.
Thanks for reading my first book😀 xx
Gosh I’ve seen so many rheumatologists that I’ve lost count! Both NHS & private. Eventually after 16yrs of living with an ME & Fibro diagnosis I worked it out for myself! I told my GP I thought I had EDS & after being referred I was diagnosed right away. I’ve since been diagnosed with POTS, mixed autonomic dysfunction syndrome, CCI & a few other things. I’d still be undiagnosed if I hadn’t worked it all out for myself. Dr Mittal at RNOH is good.
I completely agree with you. Specialists dedicated entirely to autoimmune and who understands it takes so many forms it's impossible to categorise them into one box and offer a tick list. No one disease is identical to another and that itself surely shows it's impossible to set a specific diagnostic criteria. Each case on its own merits and the autoimmune world would be a much better place xx
Sounds like you are going round in the circles I did. It was the awful exhaustion that I kept feeling at that point in my late 30s that it wasn't right. The lost kidney and brain hemorrhage masked what was really going on but since a teenager I've had umpteen mouth ulcers and never been quite the energy of other people, could never sit in the sun without feeling awful, with odd joint pains that at my age I shouldn't have had but it was all too vague. Like I said, the tiredness made me not give up as I just thought it was wrong to feel over 80 when I'm still 51 in terms of stamina. My body was fighting something, autoimmune disease. It was a lump coming up on my eyeball back in spring that finely got me to the right place and from what I've read just luck I got a great Rheumatologist. I am under Dr Elizabeth Price, Swindon who is a Sjogrens expert. I had no positive bloods for that but so many dry symptoms she ignored the blood results. As I said just a boderline dsdna positive test for Lupus. I am yet to transfer back to NHS as all this was done privately. The NHS Ophthalmologist missed the dry eye completely a few months before so I'm apprehensive. I now have the good feeling I know whats wrong. The GP was ok but didn't know much about Lupus or Sjogrens but I message them with what I need and have not been refused yet. The Hydroxy is working fine and the advice about which make to use has been great on this site. I have had two makes now and the Bristol hydroxy is clearly more trouble to take. The pilocarpine for Sjogrens is ok but you sweat a bit more which is a joy during menopause 😀 but fantastic for creating more tears, saliva and who knows what else yet. I hope you get a concise diagnosis soon and a consultant who takes the time with you. I feel like a weight lifted off me after all these years and to be honest scared of what would happen next to me and why. I know and can be a little more on the watch about things. Just letting you know I understand how frustrating it is to be sure something is wrong for so many years but never getting a definitive answer until you are hemorrhaging symptoms. We are not stressed as most doctors try and suggest, I'm more chilled than a fridge. Let us know how you go.
Nice to meet a fellow patient. Just luck I live near her and got referred by an Ophthalmologist that knows her and her work. Only just moved to near Swindon from London so even more lucky to have her. I've seen her twice and she took her time. Going back end of the year I think for follow up. Have you been going to her for a while?
Well it’s been a long day for me. And for anyone else out there who has experienced Facts, opinions all under the title of experience. Doesn’t really matter where you live. If you live a life with autoimmune diseases it’s a tricky life. Trying to find someone qualified to diagnose you and treat you properly. My kids had good teachers and bad teachers. I had a good surgeon and a bad surgeon 7 years later and guess what ? It was the same surgeon. Guess he fell down his own rabbit hole and
I became his tricky experience. When we are not heard by our Doctors then we become victims. But we keep getting up.
People with chronic illness not only need
Correct diagnostician and care but follow through care; like grief counseling. (I had to
Pay for mine😩) Nothing is normal about spending 30 years trying to nail down the correct diagnosis or the death of the life you had after treatment. We want treatment. But it requires us to change again and again. When we get through the first few changes then we must leave victim hood behind and learn to live with grace
Have you had a liver scan or pelvic MRA? Positive ANA are seen in many liver diseases not only autoimmune diseases. Maybe you are seeking the wrong specialists. Focus on those liver numbers and it’s cause. Hope you find answers.
Thanks, good to know. You don't quite believe it when you get a good one first time. Luckily I'm only about half hour away from Swindon DGH. Seems like schools you need to move into the catchment of a good Consultant. Although they can always move.
It will be a life’s work to deal with all your responses 😆 You make a very good point though. Perhaps there should be a quality control on these ‘professionals’ or a patient review page similar to online shopping sites! Good luck 😉
You’re not wrong. I’m trying desperately to reply to everyone and with the time and care they deserve but my hands are killing me. Combine that with an 8 month old who has just started crawling and a 2.5yr old wanting Lego, trains, park, potty training, snack, bumped head and god knows what, I don’t know when I’m going to get to them all 😂🙈 I only expected one reply at best lol! This is wonderful though. Definitely need a ‘Trustpilot’ for medical peeps. ‘TrustDoc’? Could be on to something there xx
Hello rena2. We have in the US several review sites and one in particular is taken quite seriously. The sites are proving to be Accurate however; must try to dig more information as there are people who post
Because they feel mistreated and not the
Fact that the diagnostics were or could have been good. So I applaud you for not
Posting because you were mistreated. It
Would be helpful if there were an over site committee for those complaints. As I’m
Typing this I’m thinking who would want to be on a committee like that😂Maybe if the committee conclusion involved jail time ?😀
Hi Tattyasha. Good to 'meet' you and welcome to the forum. Great post and lots of interesting responses. I typed a long response, then lost it all, so second time lucky! My own diagnosis story is of being diagnosed with ME aged 14. After struggling along for 20 years, often housebound and quite unwell, I was eventually diagnosed with lupus at 34. I've been told by rheumatologists since that it was likely to have been lupus all along. Seen several rheumys, 3 NHS now, 1 private. 2nd rheumy at a 'centre of excellence' was giving me the 'it's all fibromyalgia' line, so I saw a private rheumatologist, Dr Kaul at the London Bridge Lupus Centre for a second opinion. He doesn't go along with the fibromyalgia malarkey. He's done a talk for Lupus UK about this issue of it showing in the bloods, still available on their website. I think maybe being able to say I'd seen him helped me with the NHS rheumys. I'm now starting on a drug he recommended, Mepacrine, under the NHS, after having to stop hydroxychloroquine because of the effect it was having on me mentally. Hope you get some help with your next appointments, and so sorry to read about your mum's mistreatment further up the thread. Xx
I've seen two rheumies. The first said I had Mixed Connective Tissue Disease and sent me on my way. the second one didn't even examine me, barely looked up from his notes and sent me away with a diagnosis of fibromyalgia - ignoring the first one. I've had the Malar rash (many years ago but nothing is on my records!), a positive ANA test (which my GP dismissed), aches, hives at various points (which thank goodness I do have on my medical records), at various points been told by a dermatologist that I had discoid lupus (again over 20 years ago and the notes have been lost) so yes I feel your pain. Nobody seems at all interested. My GP now says that they can't re-refer me to a rheumatologist and they've exhausted everything. Have no idea what to do now. Thinking of going private to the London Lupus Centre - anyone done this?
Hi Tattyasha. I responded to a similar post about 7-8 mos ago for a patient struggling to get a UCTD vs MCTD diagnosis. Maybe you can use some of the tips, not so much the actual questions from this post. Maybe substitute lupus for MCTD. I am a board certified internist with heme/onc training (fired during fellowship). I can tell you that the applicant pool for rheumatology isn’t the cream of the crop. Smartest/brightest typically go into oncology, cardiology or pulmonology so rheum doesn’t really harbor a high concentration of geniuses like other specialties.
I’m no board certified rheumatologist so take what I say with a grain of salt. Physicians hate being told their business. We like it when patients are more inquisitive than demanding. Then it lets us all travel at a leisurely pace to the conclusion of a diagnosis or treatment plan. Unfortunately, CTDs don’t really afford us much time to figure things out. They just hit us like a ton of bricks.
Maybe what I would do is take a list of questions you have for him. Prioritize your 3 most worrisome. I’d ask him:
What’s the difference between UCTD and MCTD? Follow up with if I have or had positive antibodies, can I still have UCTD?
What treatments are available for MCTD vs UCTD? I can tell you there is limited treatment options for UCTD.
If that doesn’t get him there then ask what would be needed (in his opinion) to garner a MCTD diagnosis? So if he says lung involvement, you got him hook, line and sinker.
Let him fall into his own trap. Maybe a little mind gamish.... but it happens the other way around much too often.
I bet if your went through these questions with him, he may have a light bulb go off. Then it seems like it was his decision to diagnose you with MCTD. Doctors value autonomy so when we (as in patients) demand things or insist on certain diagnosis/treatment, it will rub docs the wrong way. Doc egos are middle of the road to hugely inflated, which sometimes makes us write people off who think they know better. Esp since we study to be doctor for like 6-10+ years (here in the US at least). Don’t let them intimidate you. We are all fallible human beings who deserve respect. Doctors aren’t perfect even if they act like it. And younger ones are harder to budge because they are fresh off the assembly line.
Keep us up to date or if you get anywhere or get a definite diagnosis. xx
But no one wants a doctor that questions themselves either. That’d be scary too. I think the ego is also reinforced by the way we treat physicians like they are Gods. While we do save lives quite literally, I’d throw much more kudos to a firefighter. They run into danger willingly to save lives and get paid next to nothing. Volunteer firefighters always perplex me.
No question firefighters deserve great respect. The insurance companies in the US knock the doctors down a few pegs with the constant questioning and rejecting requests for services.
By the way, I have found the oncologists to be guarded - was perplexed until I realized why.
Excellent news! I'm so pleased for you. Please keep us updated.
I might be closer to a dx with the help of Foggyme who spotted I have highly raised parietal cell antibodies. She's seen my recent haematology, which she suspects shows a chronic B12 deficiency - under treated for decades - with macrocytic anaemia and PA. This could well be related to my walking and spinal issues.
But it's early days - and I've been here many times before!
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.
hope you're keeping well. x
Another post on diagnosis 
Positive ANA, antiRO52 and AntiRO60 - any advice appreciated
Lupus or another Autoimmune Disease?
Advice on talking to rheumatologist 
Never Ending Back Pain
