I am so sorry I have to vent and rant like a mad woman. Was told by my rheumatologist nurse that I was being treated for lupus which I thought means that’s what I have. Have seen the nurse a dozen times and my rheumatologist twice privately and twice on the NHS. After a turn for the worse following taking the medication have added dozens more symptoms to my already long list and wanted answers. All I got was silence and had to force a few replies from my nurse at my appointment. Imagine my surprise when I asked do I have lupus or not or is it something else. Look of blankness came over his face and said I don’t know you need to see the rheumatologist I then asked him why haven’t I seen him and what am I doing here. With a weary look upon his face he said you have too many symptoms we just don’t know what’s wrong with you. I then asked well do you have any ideas or clues as to what’s wrong with me. I presented him with a diary of symptoms he glanced at them and said we need to speak to dr at rheumatology dept. Apparently I was only seeing the nurse to get me on the right dose of lupus medication the dreaded (hydroxochloroquine) medication without side efforts. They didn’t have a clue as my side effects were awful blood dripping from gums my skin on fire etc. I only kept on them as was told off for not taking them. I was too ill to continue. He wearily wrote a few notes on my file. Probably she’s suffering from health anxiety. I had 5 minutes to rant and after getting nowhere I left with nurse saying we can get you in to see dr ******* in 2 months time. It’s back in 2 months time or I see him privately in a week or I go to the drs to get a Referal to a real lupus specialist in Leeds. One recommended by Paul. I have been at the rheumatologist for almost 14 months and in that time have learnt nothing at all. The best information is what I have learnt from this site. It’s so frustrating and am now at a loss as what to do. I have kept journals and diaries. Given them a list of all conditions and symptoms and all I get is well we don’t know. Honestly you would think in that time they would have referred me elsewhere. I have to have one more set of blood tests for them to compare with the last lot. Am at a loss as to what to do. I have M.E and Fibromyalgia maybe they will say it’s that. My drs are useless have stopped going. Am now forced to go private and am selling all my belongings in the search for answers. I also have the symptoms of scleroderma, lupus and Sjögrens too. I can’t diagnose myself and am sick of the length of time it takes to get nowhere fast and nothing done so it’s back to square one. Does anyone have a shortcut to getting better medical care. Can I insist on a second opinion or am I just wasting my time. It’s now plan B whatever that will be. 😂. Thank you all for your help and guidance as I have nowhere else to turn. My husband doesn’t have a clue how I’ll I am and thinks being positive and staying silent is key but my son is so supportive as he has seen first hand how I’ll I am and has seen me through countless hospital appointments and A and E visits and is shocked that no one has a clue or any answers. In this day and age you would think that I can’t be the only person on the planet to present with the same long list of symptoms with multiple illness. Thank you everyone. 😀😀😀.
Rheumatologists are they qualified and trained at... - LUPUS UK
Rheumatologists are they qualified and trained at all. Totally fed up of dismissive healthcare professionals who clearly don’t have a clue.
Many doctors who do private work will transfer a patient to their NHS list if it is appropriate and the patient is willing to travel if that is required.
You may not be the only person on the planet with this list of symptoms - but you are probably the only person THEY have seen. And you aren't in the textbooks which is what they have to work on. Does the Leeds person Paul suggests do private work?
Hi am unsure if he does private but am looking at my rheumatologist or my gp to refer me on to Leeds to see him. I will do some research and call the hospital in Leeds to get more information. I think it’s so much easier if we get the right help and so much harder when your just not getting any help at all 😂. Fingers crossed and if I find a good consultant I will let everyone on this site know. Have a great week. Take care. Elena.
I’m in Leeds and rheumy there have what they call a CTD clinic for the mixtures. I have sclerolupiesjorgens ( my name) with Secondary Raynaud’s. Fortunately hydroxy has helped for me, together with supportive add ons as needed and as the others popped their heads up. My next appt is with the nephro CTD clinic which I didn’t know existed. From looking at other patients and guessing, I think they see RA as a separate specific condition. They are currently concerned about my kidneys.
Separately I’m covered by urocolorectal specialist nurses who keep all in touch, and are helping me with my deteriorating guts.
Having said all that, I don’t know where you live so my experiences may not help.
After going on about me, I must add I’m so sorry about your experiences. There are so many long journeys others have had to get anywhere it stinks x
Hi thanks for letting me know about your positive experience at the Leeds hospital it’s given me hope. I have M.E, asthma, Fibromyalgia, Gord and a whole lot more to deal with on top of the new symptoms which are similar to lupus but may be something else. I am currently wanting them to test me for scleroderma and Sjögrens as I have all the symptoms so hoping that Leeds will help. Am currently filling in the diary and taking photos in the vain hope that someone may know what’s wrong with me. Am now needing bladder and bowel surgery and a possible hysterectomy and hope I will be operated on soon. What a year let’s hope next year is much better. 😂😂😂. I have to laugh or else I will go insane.
Indeed we do! Looking back, GERD/GORD was my first symptom but I assumed stress and didn’t go to my GP until I was waking up choking and nervous of inhaling. Oh, and losing a couple of stone, made my GP scold me! Lost more since then, but am keeping stable albeit very underweight.
At the same rheumy/ CTD clinic I go to, they have physio, hydro physio and occupational therapy too. Long waiting lists I’m told but it’s worth asking to be told about a cancellation.
Hello, I’m sorry to hear how poorly you feel. I can relate to it though as I had similar experiences with doctors. I would do as Paul recommends and go to Leeds. I was recently diagnosed with Lupus at Chapel Allerton, during my consultation I was seen by three different rheumatologists who specialise in lupus and related conditions. My consultation was not rushed at all and I was treated with the utmost respect.
After they scanned my nail folds I was told “you clearly have lupus, unfortunately for you the doctors you have seen previously were not experienced in lupus. It is not in your mind it is very real”.
If my experience of Leeds is anything to go by, they will not be influenced by previous doctors reports, but will make their own mind up.
I do hope you get some help. xx
Thank you meg for your advice it’s given me renewed hope that someone may know what’s wrong with me. I was very interested in what you said about nail folds as my nails are so bad they have ridges in them and are so rough and dry looking. I will be speaking to my gp in the morning to try and get a Referal. No one seems to know what’s wrong with me and it’s got so bad all the rheumatologist amd the drs want to do is give me pills and I have to fight for answers as no one is telling me anything so I am now going to write in a request to see my medical notes so I can maybe get the answers I need. I am just so glad your getting help in Leeds. Maybe I too will feel much better once I can get to Leeds too. Have a great week. Take care. Elena
Elena, I was referred there by Dr Sutherland from the chest clinic at LGI. I think the nail fold scanning checks the capillaries for signs of disease activity. As I was only diagnosed a month ago I’m not very knowledgable about tests they do there.
Good luck, I hope you get some help. xx
Thanks meg as I never even knew about nail checks. Cheers. Elena.
When I first went my blood had scleroderma markers. What followed was tests of every kind to check heart, lungs, and other organs. I’m not entirely sure what the nailfold capillary test was for, but at the time it seemed a new “toy” and the Prof called students in to look. Easiest test ever. Tiny bit of oil on nails and peering through a microscope.
Thank you so much as I didn’t know that bloods may have the scleroderma markers I must ask my rheumatologist to check for it and the nailfold capillary test too. Thank you at least on this site every one seems to have more relevant medical knowledge than any dr or specialist I have encountered. 😂. It’s what keeps me going when I think I am getting nowhere. I don’t seem to get any information from the appointments and think what a waste of time. Have a great evening and thanks again. Cheers. Elena.
Hi Jeromicus, I am also seen at Chapel Allerton clinic in Leeds. I was referred there by my local Rheumatologist who was struggling with my diagnosis as I have a lot of different antibodies and symptoms. He originally suggested MCT and Leeds have settled on UCTD with signs suggestive of Lupus. Did they tell you what your blood tests show? I'm not sure if you can but maybe you could ask at your next appointment if you can be referred on to Leeds? I'm quite new to all this so I'm not sure what the protocol is for requesting referrals, mine was just done for me. I hope you can get some further help.
😊
Thank you for your reply. I have a copy of my blood tests somewhere in the house and think I will have to get more medical reports as no one will tell me anything it’s so frustrating. Now I know you have been referred by your rheumatologist I too will ask can they do the same for me too. Thanks and have a great week. Elena.
You can't expect doctors to know everything, there are so many things in our bodies that medical science still doesn't know. I would suggest to keep going to different doctors and doing different tests in the search for diagnosis. And please dont go seeing a nurse, they are the last ones to be able to help you. Ask A good rheumatologist that doesn't know what's wrong w you to send you to a specialists who could do more tests, if they think it's not a rheumatological disease. Did HQ help at all? If you have lupus or similar autoimmune disease it should at least help w pain? Did you see a neurologist for burning skin pain?
Hi thank you for your reply. I haven’t seen a neurologist but it’s on my list as I feel they may just answer a few of my questions over all my symptoms. I will pay privately for a consultation if I don’t get anywhere so maybe that will help. Yes your right about the nurse he was totally clueless. I just thought it would be easier for them as I can’t be that unique. Never mind eventually I will get answers but I have been like this since I was 17 I am almost 54 we joke in our family that even if they have the rest of my life to figure it out we will still be going round in circles. Maybe I should just plod on and hope that they will just stumble upon the answers. 😂. Thank heavens I have my sense of humour and my sanity still intact. Have a great week. Elena.
Keep up w humor!
Thank you Louise I have to laugh or else I would cry. 😂. Can’t believe you too are having problems on the medication as my rheumatologist made out it was just me and every one else was fine on it. 😂. I will explain to him I have been on this site and it’s just not true. 😂😂😂.
I have to say that whatever name they give you for what’s wrong, the treatment is often similar, except for Sjögren’s which, for me, needs stuff for dry eyes and mouth. They tried meds to help the Raynaud’s but those made my lifelong low blood pressure drop through the floor.
Omg did they give you the nifedipine as I am now allergic to it. Did the drs suggest anything at all that helps you. I think that because I have M.E, anxiety, Fibromyalgia, reynauds, asthma, gord, cysts on ovaries and gallbladder, fibroids, polyps, haematomas on my liver plus half a dozen more illness and the fact I have been in hospital with a high level kidney infection, pleurisy and 3 laparoscopic procedures and seen a hundreds of so called specialists and had so many tests done that it’s time to throw in the towel and give up as the NHS are having to cutback on spending. If I hear well we have done every test I could scream. Clearly they haven’t done the right tests or I would be properly diagnosed and treated by now. How do you cope with reynauds and Sjögrens amd not tolerating the medication clearly the medical profession are not helpful at all. I hope one day there’s a cure so you me and everyone gets the help they need. Thank you and everyone on this site for your replies as it’s whats kept me going when I have felt like it was just me. I suspect I have Sjögrens amd Scleroderma my eyes and mouth are sore and dry especially in the morning and I am forever thirsty drinking a lot of water it’s just so frustrating as years are going by whilst the specialists are just fobbing me off, giving me toxic medication or branding me as anxious. It’s an insult to everyone like you and me who are genuinely unwell and left having to cope with multiple illnesses and symptoms. Have a great week and if I find anything that helps I will post it. Take care and thanks again for your advice and support. Elena.
I’m on hydroxy as long as it’s the right brand. It took some time to get through the initial couple of weeks of stomach upset and intense itching, then about 6 months for me to feel the effects, though others said they’d noticed it after 3 months. Afraid it takes sometime to get the effect.
For pain, I have 2 BuTrans patches 20 and 5 mgs or whatever the measurement is. I have amitriptiline as an extra when needed.For GORD I take omeprazole, 2, twice a day. I’d got ulcers right down my oesophagus as a result of ignoring the GORD. The endoscipies showed slow stomach motility. Nothing for Raynaud’s because nifedipine has me on the floor with low blood pressure. They once tried gabapentine for pain but in a short time of starting to titrate I was hallucinating. That was quite funny because they were amusing hallucinations but I stopped it fast before they turned nasty or I stopped realising they were hallucinations. Lactulose, laxido, fybogel etc for constipation, but now bowel irrigation. Urge incontinence which may or may not be connected. Eyes drops etc for the early Sjögren’s. Other things I can’t remember!
I also have bipolar disorder with three meds, but that’s well controlled and my psychiatrist is seriously annoyed with the rheumy people. He’s been my psyc since before I became physically ill so he’s seen the deterioration first hand.
To be honest, I think I’m taken very seriously because I look so ill. I once saw a dietitian for the weight loss, but their advice was insultingly obvious, and they couldn’t get it through their heads that a between meal snack was a full meal. The ulceration of my oesophagus has narrowed it so I can only manage toddler potions of soft food, otherwise it get’s “stuck and I (sorry) have to regurgitate.
I’m amazed at all your in patient stays without anyone trying to join the dots but I’m afraid consultants work in silos.
Thank you for all your advice and I really hope that your ok, keeping well and feeling much better. You have many symptoms like me and it’s just so hard to keep going. Hoping that in the future there’s a cure for you and I and every one on this site with I’ll health. I am now reading every post every reply to try and gain real medical knowledge that may help me or someone else. Have a great day. Take care. J😀
I’m happy to help where I can. This forum is the best place to be!
It’s a hard old journey - I’ve been shunted around - more times than I care to recall only to find I’ve landed up back in square one.
All my life it’s been a case of having “just this.. or that” - always slightly diminished by people who know someone worse off. My late mum used to say “it’s just eczema!” as eczema took over my hands and face. I was never made to feel worthy of doctor visits and I think this state of affairs has just continued. This means I’ve always felt a bit of an imposter on every community apart from this one.
I have a equivocal antibody and ANA pointing to scleroderma but because I didn’t have anything show on nailfold test a few years ago I’m not allowed to think of my late onset Raynaud’s as secondary or entertain that any of my symptoms could be scleroderma. It’s not that I want them to but even with a firm diagnosis of Sjögren’s.
I’m so adversely affected by imposter syndrome now that when the CTD dr said this antibody plus ANA were positive for scleroderma but I didn’t have it I asked CTD dr if I might have it and he said no and dismissed my antibodies as a false positive. How can he actually know whether they are false or not?
It’s hard to be find you have a disease or condition - settle gradually into the idea as best you can - only to have it renamed and for different doctors to come out with completely different approaches to treating and monitoring one rheumatic disease to another.
I totally understand and what a shame that the drs are so dismissive as you could have dozens of things not right health wise and even when the evidence is staring them straight in the face they still say oh your fine you don’t have this or that. How many people are walking around with illnesses and conditions that are not picked up on by people who are supposed to be trained and qualified in their job. It’s a joke as how many people out there who are just so unhappy with their healthcare professionals. We have to put up with their dismissive ways I now have got to the point where I feel I am bothering my gp and have stopped going. I now dread the appointments after my last one and I just give up, so as you said it’s back to square one. People on this site are more medically trained than the people in any hospital. If I hear one more time from a dr we don’t know what’s wrong with you in disbelief I swear I will scream and shout well you need to go back to medical school and do your training all over again then you might just be able to do your job like your supposed to be able to do In the first place”. Yes I agree they just make an assumption amd stick to it like glue. You should have been offered more tests till it became clearer what was wrong. Just because they give us an opinion on what’s wrong doesn’t make it true as it’s not always based on fact. They are useless I say to my husband and son that I want to be reincarnated and come back as a dr who can actually do the job. 😂. I hope in time you can have further testing as it sounds as if they haven’t been thorough enough done and you may actually have underlying conditions that need looking at. If you haven’t got your medical records try getting copies as you may learn more once you read through them I found conditions I had which was never discussed with me. Results that were not normal which was never explained to me and so on. I hope you can get further tests as you deserve to have the answers and know that your getting the best medical care. if I get the help I need then I will definitely post on this site. One day it may actually be a reality. 😂, take care and thank you for taking the time to help me. Cheers. Elena
I think it’s awful that you have been treated by so called professionals who are supposed to be highly trained and yet you are dismissed on every level. You deserve top class care as everyone else does. Yes I agree they don’t allow you to ask questions or enquire about tests and you are treated so badly. At the end of the day it’s their job to diagnose and treat us. Most often than not the so called medical and healthcare professionals are horrible and looking down at us. I have had countless appointments thinking at long last someone who will find out what’s wrong and help me only to come up against people who are not properly trained or qualified and who have no intention in helping us. It’s not like we can diagnose and treat ourselves that’s supposed to be their area of expertise. I am so determined to get answers and treatment that I am going to try everything and anything. Thank you for your advice help and support as I have learnt so much from you and others on this site. I wish you a great week and hope and pray you get answers and help from genuine drs who really want to help. Didn’t people go into the medical profession to help people get well or have they lost site of that. Take care and if I find anything at all that works I will let you know. Elena.
Hi Elena. I fell asleep while writing and sending to you so sorry my reply was a bit rambling!
The thing is that I’m a highly organised patient and I know brick walls when I’m getting close to them now. And I recognise I’ve hit brick wall again with my present medical team. I know I’ve been told a few bare faced lies and many more highly speculative comments dressed as fact. So, I think, does my GP
I do think it’s important not to diagnose us for the sake of diagnosing actually and I’m lucky in some respects that I was believed and misdiagnosed with RA. But how am I expected to trust my doctors to know best when doctors have misdiagnosed me often over a lifetime? So I now only trust doctors who admit they can and do get things wrong!
Then I was rediagnosed in a new hospital with primary Sjögren’s - which was always going to be a better fit for me due to the neuropathy. So in lots of ways this is enough and I’m hypothyroid too so I know I’m autoimmune - although the CTD dr tried to suggest that I wasn’t autoimmune because of my lack of specific antibodies the other day. Grrrrr. I had to tell him firmly that I am still at greater risk of acquiring more autoimmune diseases than the general population so should be monitored for this. He reluctantly agreed but only just.
What seems to happen is that our doctors get a bit fixed on an idea that suits their agenda. So if the agenda is coming from senior management that extraneous matter eg patients who have something intractable and untreatable like Sjögren’s - are clogging up clinic lists - then we must be discharged back to primary care with “just Sjögren’s”. Even though it’s a recognised autoimmune disease it’s treated like Fibromyalgia plus Sicca. In vain do we point out that it’s so much more serious and can affect our organs or even cause lymphoma or MS like progression. They say no this is “functional overlay” or “chronic illness”.
And saying this over and over to us becomes a self fulfilling prophecy in a way!
My point is that I have some sympathy with them not feeling sure or being able to give what we have a name other than UCTD perhaps. Other than RA, Rheumatic diseases aren’t always that easy to pin down or identify.
What I dislike most is when they get rid of people just because they can’t treat us pharmaceutically rather than keep us on their patient lists and monitor us for changes and encourage research to include people with seronegative diseases. I mean how will they ever find a cure or successful modifying treatment if they lose us back to increasingly thin primary care services? It makes us feel like old football being kicked about in the yard prior to dumping!
And come to that what is ethical about telling patients that they “just” have a functional overlay or chronic illness rather than an active rheumatic disease - simply to get us off their clinic lists? This is the brick wall moment when I decide that I’m going to have to go elsewhere and find a new team who are willing to listen and learn from having me as a patient. It may mean using our future pension up and going private but so be it.
Hopefully we will both get there in the end. X
So sorry for you I could have written your post as for 2 years I have suffered a list of symptoms but told fibromyalgia and it is unfitting to symptoms although the list for fibro symptoms seems to grow the more the diagnosis is given out. I too have been told all tests I have had ok and it’s fibro or for years I was told depression . I think I recently had a breakdown as not taken seriously, and fobbed off and left to struggle. Hydrochloraquine did help my swellings and rashes but I was taken off them and told fibro but as that diagnosis is to be made after all else I do not see why first port of call. It really is appalling that this dismissiveness goes on , I can see reading your post I am not alone but fighting your own battle it does feel like that and I don’t know how we deal with it or get heard. My latest answer was that I’m overweight and it tipped me over the edge. I am overweight but size 14 and it does not account for all my symptoms or everyone a bit overweight would be ill, I’m overweight because my symptoms have floored me so much at times. I’m sorry I have no answers as I’m in same position as you and fear keep searching will give more of the same but be strong do not like I did let it get to you , if physically ill try and keep emotionally well to fight this and find some answers. We are in this fight together x
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