Despairing after a new Rheumatology Visit - LUPUS UK

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Despairing after a new Rheumatology Visit

Hi everyone. I apologise in advance if this post is full of self pity but I feel defeated, depressed and very anxious. In March I saw a new Rheumatologist. I was hopeful as he specialises in CTD. He did not have my notes but listened to me about my constant mouth, throat and genital ulcers, pain, rashes, lack of sleep and constant infections. He upped my Hydroxychloroquine to 600 mg daily. After two months I had a very bad fall with an egg type bump on my head, a haematoma on my bum, bruised ribs, arms and legs. My balance is very poor. At the same time I posted here about the increased Hydroxychloroquine and when people expressed concern I checked my Amsler Graph. It was wavy with grey patches. I went to the Optician who diagnosed macular odema and impaired vision in my lower left quadrant field of vision. I attended the Macular Unit five days later and they saw no problem with my vision. Tuesday I returned to see the Rheumatologist. He told me he was straight and I welcomed that until... apparently he believes that my Fibromyalgia anxiety invented the odema?? He said he has a few patients like me who get referred for everything and anything and they find nothing because it is all Fibromyalgia. Without examining me he said he thinks I have had crap diagnoses and bad advice even from London ( St Thomas) and that he does not believe I have Lupus or Bechets or APS just Fibromyalgia whether I like it or not. I have been taken off Hydroxychloroquine now. My mind is racing. I was first diagnosed with Lupus in 2009. I was very ill bedridden screaming with pain, covered in raw rashes with ulcers in my nose, mouth and throat. In 2010 APS was added and Raynauds. In 2011 Pernicious anemia, Underactive thyroid, hypertension, tinnitus, trigeminal neuralgia. In 2012 I had a new Rheumatologist who disputed SLE and diagnosed Bechets and Fibromyalgia. I asked for a second opinion and went to St Thomas’s who confirmed SLE, APS, and vitamin D deficiency. Now I am told I might have had an “autoimmune episode” but my bloods are normal now. He says he does not even think I have UCTD at all. I am confused and scared. I have spent years coming to terms with having such diagnoses. Can it be that I am so disturbed I imagined it all? My Optician is sending him the images and report of the macular odema but I really feel it will do no good. Your advice would be so very welcome.

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Hello I am sorry you had such a consultation I was told I had fibromyalgia even with one proven autoimmune disease primary biliary cholangitis this was after my liver consultant sent me to see rheumatologist I knew it was wrong I was also told blood was negative.I went away and got worse for almost 3 years when I could stand it no longer I went back ( my wonderful GP always believed me and referred me back multiple times ).The new rheumatologist wasn't sure what it was she couldn't find much but at least she kept me on the books I continued to get worse and started to keep records of my symptoms photos of rashes swollen fingers red eye's etc, then one day she got her colleague to look at me and by this point I pretty much felt like I was dying at times.Then I had biopsy, ENT,dermatologist consultation, ct scans the lot. I spent most of a month visiting the hospital, my bloods were run again, the consultant explained the normal test only looks for common autoantibodies which I didn't have he got the rest done by hand and found autoantibodies, in fact my bloods were by this point so deranged I had to have lymphoma ruled out.I turned out to have MPO vasculitis.I was put on immunosuppressive treatment and now feel so much better.If you're sure that fibromyalgia doesn't fit your symptoms and you sound like you are I would ask again for a second opinion of that's possible, maybe at a centre for excellence. And prepare with as much evidence as you can.I was taking my temperature during my attacks every hour and plotting a graph! ( although this was at a doctor's request my symptoms were extreme attacks of pain with rigours shaking ect).Don't give up I know how hard it is you deserve to have a quality of life, and to have your symptoms properly investigated and addressed.I lost 3 to 4 years in the wilderness because I gave up I really wish I hadn't.I really hope you find someone to help.Jane

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Thank you Jane. I hate myself for feeling so low now but I recognise a lot of what you say. I too was told I had Low Grade Lymphoma and was scheduled for biopsies on the lymph nodes around my heart and lungs. I refused and asked for the referral to St Thomas’s where they categorically said I did not have Lymphoma but SLE. 400 mg Hydroxychloroquine and a long course of steroids and my CT scan came back normal and I was discharged from Haematology and Oncology. The difficulty is once you get a Consultant that labels you an hysterical person, the more you argue your point the more you confirm his perception.. I have already been down the route of photographs of my rashes, bruises, ulcers, swelling. I had hoped for some relief from all that. The Rheumatologist who disputed the Lupus last time actually wrote on my records “ this lady is desperate to have a Lupus diagnosis but unfortunately for her I cannot oblige”. Who woukd ever chose Lupus? I stopped seeing Rheumatologist for two years because I had no faith in them but then I got I’ll again and had to be re referred. I do hope that you are starting to feel better now? Xx

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This is so disheartening what you have been put through. Just when you felt some hope at an understanding and treatment, that would get taken away. I think the doctor owes you more than just “this is a crap diagnosis.” He needs to look at why the doctors have given you the diagnoses they did. Also, what does he mean by an “episode” of autoimmune disease?

If you have your letters, that might help. Feel free to post. Can you go back to the center in London?

Also, TT posted an excellent video on neuropathy. The doctor talks about fibromyalgia. It is a label, not a diagnosis.

Hope you can get some clarity.

K

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Thank you Kay. I needed to vent. I do feel so low about it all He was so utterly dismissive. I spoke with the Optician who laughed uncomfortably when I told her that he felt my brain had imagined that I had no peripheral vision and caused the oedema. At least I will be able to prove that there was oedema when I get a copy of the scans. The Optician actually said I wonder if he is responding negatively to the fact that he exceeded NICE guidelines in prescribing you an overdose of Hydroxychloroquine? She may have a point xx

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Have you considered raising a complaint? You have evidence to prove this person was being dismissive and express your utter disappointment and distress. You might get a 2nd opinion without having to go to the gp for it!!!!

I’ve had the mental label put on me 🤨. It’s devastating and it does send you backwards in terms of pushing forward to get the help you need.

Don’t doubt yourself. Do some meditation to relax your mind and regain your strength to battle on. It’s hard graft but you will get there and we are all here to support you during tough times .

Xx

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Thank you Lisa. I did think about making a complaint but to be entirely honest I am scared. My first Rheumatologist diagnosed Lupus but missed APS. When I asked him had I been tested for it, he actually sneered at me and said so you have read about it on the internet and now you have got it right? I said how dare you and walked out. It took me half an hour to drive home and as I got in my GP was on the telephone stating he had been on the phone to her saying that I had tested positive nine months earlier so needed to be put on blood thinners. My second Rheumatologist said I had Bechets and Fibromyalgia so I asked for a second opinion and went to St Thomas’s. My last Rheumatologist kept throwing it in my face that if I didn’t like what he said I could always get a second opinion followed by but you are running out of Rheumatologist aren’t you? So unfair as I only complained about the one. Now that there are only four of them all working together the chances of my getting a balanced view is minimal. They are recruiting for two posts though which might be my chance of getting a more balanced view. I am so sorry you have had the mental health label too. Before I became ill I had never taken an antidepressant but being ill all the time it gets you down. Thank you for your kind words. I am so very grateful that people here understand xx

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I cannot express enough my very deep contempt I have for the “club” they have created around them. The swine. Sorry, butting in here.

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No not butting in. I think it is valid. I feel that way too sometimes.

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I am glad with even temporary macular edema you are off HCQ for now. The HCQ does lower antibodies so it could be why your blood serum is showing negative at this time. How are you feeling presently?

Have steroids and HCQ been helpful in regards to lessening your symptoms in the past or did you continue to experience more and different symptoms whilst on them? Did you have three miscarriages or a clot to receive the APS diagnosis? Physical criteria are necessary with the antibodies to get an APS diagnosis.

Did this doctor offer any advice on if it is truly fibromyalgia how to go about treating that? CBT and ssri's are usually very helpful for fibromyalgia and also connective tissue disseases as well. Newer studies are showing brain inflamation as a relevant symptom or cause of fibromyalgia so lowering CRP and ESR are very helpful in preventing symptoms of fibromyalgia and preventing the greater heart and stroke incidences that are prevalent in fibromyalgia patients.

Also do you see an endocrinologist for your thyroid? Macular edema is often a result of diabites caused neuropathy. Have you been tested for metabolic syndrome markers and had a fasting glucose test?

keep notes and move forward do not look at this as a set back. Being serum negative means maybe you are in a remission so enjoy a break from disease for now and the main goal of HCQ and other treatments for autoimmune disease is lowering inflammation. If needed you can do that in holistic ways aswell. Exercise, high fiber diets, flaxseed oil, vitamin d and stress reduction lower inflammation and antibodies without any side effects :)

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You are not disturbed and doesn’t sound like you are imagining it. Hang in there💖💐when I had a stroke like episode my doctor said, “well, you are getting older” I was a fit 54 yr old then. Made me upset enough to figure out a path toward healing. (which it took a year using natural methods and diet that I figured out myself) Have since been diagnosed with leukemia which is no picnic but getting great care. I’m sorry you’re going through this. Sending healing thoughts.

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Thank you so much. I am so relieved that you are getting better care now. I am so sorry about your diagnosis. Life is so hard sometimes. Hugs and the hope of a better tomorrow for you xx

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I never feel well. Because of my haemaglobin Anaemia, Pernicious Anaemia, underactive thyroid, osteoarthritis, Raynauds, trigeminal neuralgia, mouth, nose and genital ulceration even a good day is not brilliant. All these things stemmed from the first bout of illness. I choke periodically on my food, my balance is very poor. I do everything I can to keep as active as I can but I have one collapsed knee cap and another dislocating knee cap. Six times I have gone for pre op tests and been told I am not well enough to have total knee replacement surgery. Yes Hydroxychloroquine and steroids have lessened the pain but I am frustrated that I keep getting referrals to other specialties with inconclusive or no results or findings for instance I had a heaviness in my chest I was put through echo cardio gram, angiogram only to be to,d Prinzmetal Angina and discharged.. Yes regarding the history of fertility problems and miscarriage for the APS diagnosis.No no advice on Fibromyalgia treatment.. No I do not see an endocrinologist but I am on 120 mg Levothyroxine. I have regular fasting glucose tests and my levels are 3-5. I take Fultium D twice daily prescribed by a Rheumatologist at St Thomas. I am a vegetarian, partly vegan . I do not exercise as much as I would like because of my knees and weight but I do attend a gentle exercise class and go to the gym when I am able. I have a wheelchair but try to walk with sticks whenever I can. I wish I could see this as positive but sadly I am unable to. It feels like yet another set back.

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Firstly I’m so sorry for what you have been through. I’m so appalled for you that, despite being out with my husband, I felt I must respond.

I know it’s tough because, if I hadn’t had friends here and a very positive lip biopsy result and extremely high inflammation levels, then my doctors would be saying exactly the same to me.

Contrary to something someone else here has said - being seronegative does NOT mean that you are in remission!?!

In fact being seronegative just means it’s more slippery and hard to diagnose and to treat these rheumatic diseases. Please do not let anyone make you feel that this doctor was right and that you should now feel well and happy that it’s all of the mind!

I’m off all meds after severe reactions to 5. I can’t say I miss being on such powerful and potentially toxic medications at all. And nor is my Sjögren’s in remission - much as my CTD dr would probably like to tell me it is! Nor do I have functional symptoms overlaying my Sjögren’s as the neurologist has written several times. But I’m slowly training her not to write functional hopefully!

Feeling believed is the most important starting point for those of us with chronic conditions. And this absolutely does not equate to wanting or seeking out a diagnosis of Lupus it other CTDs for the sake of a diagnosis!

Basically being misdiagnosed with functional / Fibro is as harmful as being misdiagnosed with Lupus/ CTD. We need to be able to trust our doctors to work with us and to make decisions about what is wrong with our complete confidence that they are right. Trust is a mutual thing between doctor and patient and, like me, your trust and confidence in doctors has been totally broken. When trust has been broken in this way we ignore symptoms we shouldn’t ignore and overreact to symptoms we should probably ignore. Our confidence in our own judgement gets completely undermined and this, to my mind, is potentially dangerous.

So I think the best thing you can do, from personal experience, is to give yourself a great big hug, spoil yourself rotten with very healthy, cool drinks and things that please you for a week or so. You could use this time to gather copies of all your blood test results, clinical letters and other notes. If you don’t have these already then go to GP reception and put in a formal request for these or even all records. Mull on it all and plot

Then, when the dust has settled a little and you have equipped yourself with facts that support your instincts the Behcets (which I believe is one of the few diseases that cause genital ulcers) , you could start writing a very firm letter to this rheumatologist ukl, with a brief, very lucid but brief description of your health history. Just list it in bullet points leaving lots of spaces so it’s easy to read.

Then go for the jugular with this rheumatologist and tell him you don’t believe your symptoms are psychometric and that the lead rheumatologists the world over now accept thar seronegative rheumatic diseases can be just as serious as seropositive - and that they have distressed you to a great extent - and tell them exactly why. Say to them what your optician told you re 600mg Hydroxy being toxic to your eyes and query whether their prescribing error has clouded their clinical judgement so much that they now just want shot of you?!

Rheumatologists in UK do seem to be getting rid of patients as fast as they can. Mine (CTD) are trying to get rid of me too -but their case is more legitimate because I’m pretty much untreatable (allergies) and don’t have Fibromyalgia on my records or an implication of hysteria. However this is only because they know I can and will write very withering letters (sent electronically) stating facts unsparingly and copy all their relevant colleagues and my GP in if I feel misrepresented!!

Must go now but this is what I would do. 🤗

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PS sorry for typos! X

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Thank you so much for taking the time to respond to me even when out. I cannot emphasise how very grateful I am to you. Fortunately I have my referral letter to St Thomas’s With all my medical history up until that point and my DLA forms with details, medical evidence and reports up until 2 years ago so it should be straightforward to do and then get my blood and Consultant letters for the past two years from my GP. I know I am not alone in this, I have a Facebook friend whose Mum and sister died of complications from Lupus. She herself was diagnosed by Professor Hughes himself yet her new Rheumatologist says she has Fibromyalgia. She has lost her PIP and has no faith in re applying given her Consultants lack of support. My Rheumatologist is meant to be a specialist in CTD? I really wonder what ever could justify doubling my Hydroxychloroquine because I was getting such frequent bouts of ulceration to stopping it altogether? Anyway I am so very thankful for your advice xx

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You are most welcome. I really mean this about seronegative and too many doctors and others relying only these as diagnostic markers.

Mine have fluctuated and when positive the latest CTD dr says probably a false positive. So if we can have false positives then why on Earth not false negatives?

The reason it is important to write and set the record straight with this 💩 is because of the potential harm he has caused and might well continue to cause you with his inferences. This doesn’t mean necessarily that he’s wrong about you not having Lupus - but he might well be. And it’s a traumatic thing to be diagnosed with a CTD or more but it then be abruptly undiagnosed is equally traumatic!

And regardless of whether he’s right that you don’t have Lupus - you clearly still aren’t at all well, you obviously have autoimmunity and the Fibro thing should only be up for discussion as an addition if it feels right to you.

Therefore I feel a complaint to feedback and complaints/ PALS is called for if you felt able to do this - or at least copy them into your letter to him as back up. This way he can’t wriggle but has to reply and, whether or not your complaint is upheld in form of apology, hopefully he will think twice about treating any other patient in such a cavalier and unprofessional manner.

A letter that also outlines exactly what he said to you about his fellow rheumatologists would be a way of showing him and his kind up.

Good luck and please make sure you let us all know how it’s going with this important and cathartic business of setting the record straight! 🤞🏽🤗

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We don’t have PALS in Wales. There are only three other Rheumatologist locally other than him and one of those my GP complained about and I refused to have him again. I fully intend to write a bullet point history and send him the copy of my eye scans just to show I am not mad. I am very fortunate to have an excellent Chiropractor who has helped me more than any doctor in terms of pain relief. I hope he will look at the history and just maybe think about what he said and how he said it. I do know people who think highly of him and he certainly did not speak to me that way whrn I first saw him three months back.

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Well I think your optometrist has the right idea re egg on face with Hydroxy dosage. I’m in Scotland which isn’t much different but we still have complaints and feedback and can use Care Opinion to express concerns.

You might want to contact Wendy36 here and her Pembrokeshire/ Welsh Lupus UK group for advice as most of them have suffered similar treatment and will most probably have come across this rheumy and keep you up to date on future plans as they are lobbying hard for change. Xx

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Thank you so much

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Yes, it is confusing about the “episode,” right? I also was under the impression that most of the diagnostic tests are not used to follow disease activity. Some are, like the anti DNA, but most aren’t.

Speaking of disease activity, I had a victory regarding self-treatment with low-dose prednisone that may be a path for you. Don’t want me hijack the post so will put it on one of your posts.

Kx

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Sorry you are so sick still. I am guessing if you ask your GP in a few months to retest antibodies you will show positive again without the HCQ. It was working and that could explain your now negative numbers. Retest in a few weeks and ask for a different rheumatologist. Honestly my rheumatologist does the least in my treatment. My hematologist , cardiologist and recently my endocrinologist are my anchors. Are you on a low dose aspirin it might be something to discuss with your GP. I am not on it any longer my docs put me on plavix and warfarin, but for seven months I took 325 aspirin with plavix and I had less over all pain. Since going off it my knees and hips ache regularity before I get moving.

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Thank you I think that is good advice. Yes I am on low dose aspirin daily but because of the APS diagnosis they intend putting me on warfarin before my knee op, if I ever get well enough to have it done.I am under a Urologist, Orthapaedic Surgeon, Gastroenterologist and they tended to refer to my Rheumatologist. At one time when I was choking badly the Gastroenterologist wrote saying I should be checked for Crest and my then Rheumatologist wrote him a scathing response that I had enough wrong without looking for more.

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Have you had a head MRI with and without contrast for your balance and swallowing issues lately?

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Not lately no. About four years ago with and without. It picked up the TGN

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When did the balance and swallowing issues start? Was it a sudden onset, i.e. Could you have had a stroke?

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Right at the beginning. I noticed I was becoming clumsy, I fell and broke my nose, smashed my teeth out and cracked my knee cap. I fell and re broke my nose, I fell and broke four toes. I fell and got concussion. I fell and took skin and flesh off my arm. I was sent to physio. She threw a ball to me and I fell over and cut my head open on her table. Even now I fall a lot. My OT has just purchased a Manga lifting aid as I spend hours on the floor unable to get up. It is a God send. Before I started on the aspirin daily I started to think I had Alzheimer’s as my short term memory was very poor. The choking started three years ago. For a whole year my food had to be liquidised as I could choke on a grape or tiny morsel of bread. It is a symptom which comes and goes. The gastroscope showed the ulcers in my mouth are all down my trachea and bleed. I certainly don’t think I have had a stroke.

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What did he say about your genital and oral ulcers? Maybe you should send him some good photos of these with the diagnostic criteria for Behcets ?!

I have problems with my balance too although not as bad as yours. I had two falls only today (on grass thankfully) and last year fell and landed on the toilet bowl fracturing ribs. I still have a large hard lump in my side to remind me to watch my step! X

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He asked if I wanted a referral to Gynaecology as I cannot tolerate colchicine. I asked if he thought it might help as I have had two separate biopsies taken both proving nothing. I first had the genital ulceration in 1992, my Mother was dying and I was in my second year at University. My GP told me I had genital herpes which horrified me. He took a biopsy but it came back negative. Over the past ten years they have become more severe, more frequent and in my rectum too. They actually make me cry. My only relief is a syringe of Instillagel applied liberally. In fairness my GP prescribes boxes of them.

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What a shame about the colchicine and biopsies. It seems you could really do with a vasculitis expert for proper assessment. Dr Jayne at Addenbrookes in Cambridge is supposed to be second to none.

I know that my normal punch biopsies of 2015 for small fibre neuropathy and nailfold capillary test of 2017 have furnished my CTD drs with the excuse they want to tell me and my neurologist that my Sjögren’s isn’t systemically that active. I also often get pain below but, as far as I know, not ulcers - must be so sore. X

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I am so sorry that you are having such difficulty getting the help you need too. I think the medical profession sometimes underestimate the sheer despair that our illness can cause and how it blights our lives. Why would we put ourselves through such invasive and demoralising procedures unless we really wanted to get adequate help and advice? Right now I know that I would Be refused a referral anywhere else by this Rheumatologist who believes my brain imagined my macular oedema and vision loss or my GP who has never challenged anything. Xx

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Well you know he is just one rheumatologist and clearly not in an area with colleagues to compete and keep up to date etc. His right to undermine his colleagues shows him to be very unprofessional.

I’ve had 4 Scottish nhs rheumatologists in 8 years and seen 2 others for second opinions. None have had same methods or interpreted guidelines consistently. It’s such an inexact science and the ones I’ve got on okay with have asked me what I think or how I feel. Even the vascular dr I have seen most of so far has commented that I often feel ill and this is the nature of chronic illness - nothing they can treat.

So CBT is all they will offer me now - and actually that isn’t a bad thing because I’m so chemically sensitive that drugs are more harmful than the disease has been so far. At least it’s harmful to me in that the drudgery has taken over my time to such a large extent and I guess chronic illness does. My doctors do seem to acknowledge this at least as they write that my PV/ ESR and immunoglobulins will always be high now regardless of active or remitting disease - hence severe fatigue.

What I do hate is that they tell me this and write it up in a way that makes them sound so wise and clever and me sound so lame and sad! And tgis Doctor tested me such a cursory and ridiculous way for EDS and then wrote that I didn’t have it - when he didn’t even know which way to push my wrist and didn’t do a single one of the Beighton score properly - well that just sums him up frankly?!

So his tone of sympathy and speaking with me for a long time and the fact that I supposedly agreed and understood what he was telling me is nonsense! Who needs this crap when they have a multisystem disease going on day after day?! I’m better off being my own Sjögren’s dr most of the time!

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Yes I agree just one doctor but when he is it for you it is soul destroying. I sincerely hope they appoint someone quickly so that I do not have to see him again but sadly working in such a deprived area is not for everyone. I get so angry when they say one thing and put something completely different in a letter to the GO. It sounds as if you have had your share of ineptitude and are your own specialist now. How do you manage your pain? Xx

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The thing for me that I was initially diagnosed with RA in 2011 but after a few years on Methotrexate and Hydroxy it burnt itself out (or was Sjögren’s mimicking RA). Five years later I was rediagnosed having been undiagnosed by rheumy 2 (who said much the same as yours) and then rediagbosed with primary Sjögren’s.

This is how I’m able to relate to how you feel so easily.

For me personally Sjögren’s is a much worse disease than RA was as it seems to have caused more neuropathic pain and permanent damage to my peripheral and autonomic nervous system. And, unlike inflammatory arthritis, there are no meds to prevent this damage occurring apparently. Although I had a great 3 weeks on Azathioprine before pancreatitis occurred so I’ve been very unlucky with the meds.

I take nothing for pain now other then occasional paracetamol and very rarely. Naproxen. I’ve tried all the nerve gating agents now and all either cause worse fatigue and dizziness or double vision or increase my severe sicca. My rheumy agreed to order a steroid have by email request 7 weeks ago - and this really helped.

So I just put up with pain, breathe deeply and sing loudly in the bath or studio - providing I’m not suffering from one of my chronic dry coughs! These apparently stimulate the vagus nerve. I am very overweight around the girth so need to address this myself before I requesting an out of area referral to the only Sjögren’s rheumy in Glasgow on the other side of Scotland.

If I feel I need to see a rheumy then I’m prepared to fight to get a decent one rather than go back to present one. I just don’t want any more of the remission nonsense when my plasma viscosity was the equivalent of ESR of over 100 a few months ago! X

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Wow I do not envy you with no pain relief. My gut is very intolerant . Initially I was put on 9x 300mg Garbapentin by the Neurologist. I had chronic heart burn, acid reflux and I just could not function so I took myself off them. I was then prescribed Tramadol which caused severe gastric pain. Next Butrans patches but my rashes made me scratch rendering them useless. Then Lidocaine patches which caused hives and swelling. Then Oramorph which made me sick. I am now on MST which I tolerate well. I do take two Garbapentin for nerve pain at night. Going to the Chiropractor helps with adjustments, massage and acupuncture. I put ten stone on since I became ill. I did lose over seven stone to have my knee replacement surgery two years ago but having been refused surgery six times now it has crept back on. I totally agree that finding a good Rheumatologist is important and I wish you the very best of luck in the one you choose.. I told this Rheumatologist that I was getting a lot of nerve pain and he immediately said that tells me it is not autoimmune pain? I just am doubting everything I thought I knew now. Thank you for all the information, I really do appreciate it xx

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Re autoimmune nerve pain - read my recent post on World’s Sjögren’s Day or just cut to chase and watch this YouTube video - this neurologist is wonderful and is what we should all expect from our doctors I feel!

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This is a new post from the member I was suggesting you contact and perhaps join her group if it’s anywhere close by: healthunlocked.com/lupusuk/...

She’s had similar problems with Welsh rheumatology to the ones you’ve described here.

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Thank you xx

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Well I think he sounds like a turd. You know what you’ve been through. Before you go into a flare up get back to your previous physician even by phone to get back on something preventative. I had one doctor tell me he was god when it came to AIs. Really?! I fired him.

You’ve been through too much to go backwards now. Opinions are like armpits. Everybody has two of them. 👢him

Doaty

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Doaty - your 2 armpits adage has made me laugh and I’m saving it up for a suitably opportune moment. 💩💩👌🏻👍🏻😎

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🤣🤣🤣

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You made me laugh, such a rarity these days thank you so much. He was incredibly cocky. The worst thing about it is that I really am worried that I am making myself ill. The positive thing I take out of it is thank God my husband was not with me or I think he would have had to have been restrained. My last Consultant has left the country, my GP I know will not make waves to help me. Even when I was worried about taking the 600 mg dose of Hydroxychloroquine after being told I had macular oedema, her view was sorry we don’t do eyes?? I have been allocated to this Rheumatologist until such time as a new one has been recruited to replace mine so I am hoping it will not be too long. He did say if you get sick you will prove me wrong. I told him I was hospitalised the last time unable to weight bare so I don’t want to ever get that bad again.

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I’m glad you got a laugh. I’m usually good for a few a day. I’m glad you have a good GP. Your GP does eyes, right? 🤣

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Apparently not so I am told. When I rang an on call Ophthalmologist and to,d him I had lowered my Hydroxychloroquine he said you might think you are bright but you are not very clever?? I must have a sticker on my back with kick me on it 😂

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Words fail me and I am gutted by all you have written here. "If you get sick you will prove me wrong" ????whaya thing to say. Is there any way for you to get back to the person who diagnosed the Lupus in the first place. My heart is heavy for you. xxxx

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The first person to diagnose me was the Rheumatologist I made a complaint about because he missed the APS and patronised me. He apologised but I felt that I could not work with him. The second person was a Haematologist who has returned to Australia. The third a Neurologist who has left and I do not know where she has gone. The fourth St Thomas’s but neither my GP or the Rheumatologist would refer me now as his view is that I was given “ crap advice”. I am very much afraid that I am stuck. I will write him a bullet point history and provide him with the images of the macular oedema in the hope that he will have a more open mind. Xx

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Can you write to the person who diagnosed you with Lupus ? Would that help do you think . xx

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Honestly I doubt that. Sorry I do not mean to be negative but it has been my experience that Consultants usually do not like to contradict others. I can only hope that when they appoint a permanent replacement that person is more considerate. If I do not have Lupus, APS, Bechets then whoopee but I am not convinced

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keeping my fingers crossed for you. xxx

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Thank you so much xx

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Your very welcome and you have support and friendship here. xx

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Sorry you are having such a horrible time.

You need to keep copies of everything and file it all.

Photos of rashes etc.

I don’t know much about lupus,my diagnosis was 3 months ago.

I thought I just had CDT NSIP - lung disease with shortness of breath.

The MNT team discussed me ,ordered bloods +++

Last had double strand DNA and complement again.dont know why

Good luck .

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You have a lot going on too. I do hope you get a definitive diagnosis. Thank you for the well wishes and the same back at you. Life is never simp,e or easy with chronic ill health xx

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Thank you. I’ve got a diagnosis of NSIP,NOW THEYVE COME UP with lupus.

Have to have nuclear heart scan next week.plus sending me to see kidney docs and sleep apnoea clinic.sad to my OH,THINK I NEED a refurb top to bottom trying to stay positive,look after yourself

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Take it a day at a time. It must be overwhelming to go through such serious tests but I hope they are just making sure that you are clear of things as well as considering diagnoses. I hope it all goes well for you ❤️Xx

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Antibodies come and go but the disease stays.

For information on APS/antiphospholipid syndrome/Hughes Syndrome see the following:

ghic.world/

healthunlocked.com/hughes-s...

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Thank you

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Hi, I can relate to how you are feeling, I have suffered for the past 10yrs with what they diagnosed as fibromyalgia, and arthritis, a few yrs ago I was told that lupus had show up in my bloods but that it was nothing to worry about, I was diagnosed with wet macular degeneration 4ys ago and now have lucentis injections every few month's. I am still working full time and some days I feel so ill that I cannot function properly. My doctor ( whom I have only seen twice in the past Yr) I feel thinks that it's all in my head, I have my own business which is very demanding and so often feel like giving up. You are not alone with this there are many like me who understand.

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Oh that’s is just awful. I admire your tenacity to work through illness. I collapsed ten years ago and have not worked since. I felt bereaved for years that I lost my career so I understand the need to work for more than financial stability. Isn’t there any help you can get as a disabled person with your business? I also understand the frustration of having a GP who has little faith in your judgement. I had a good relationship with her until I challenged her about the treatment of my Pernicious Anaemia. Her dogged determination to adhere to NICE guidelines has forced me to purchase my own B12 from Germany and self inject. I cannot stress enough how it has improved my life. Yet she will not acknowledge it. You are amazing functioning the way you do but I feel so very sorry that you are not receiving the support you need. I have little to moan about in relation to your story. I sincerely hope things improve for you xx

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Cecily Parsley, your post made me so livid for you! Next time, if there is a next time, I'd be tempted to ask if he is also a card carrying member of the flat earth society?!

It isn't you, it is him.

If you feel strong enough, I'd ask him to explain his qualifications and justify why he feels entitled to override the diagnosis of your previous consultant, if he believes himself to hold a greater understanding of auto immune conditions than they?

Hugs to you. Lulu.

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Thank you so much Lulu. Apparently he is the CTD expert. He runs Lupus clinics and is well thought of so I had such high expectations.Because I am seeing him in a different hospital he has none of my notes and based his diagnosis on two lots of blood tests xx

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Oh my dear...what can I say except to say that I feel your frustration with it all. Having an autoimmune episode is certainly obvious to them all but isn't it possible to see just one rheumatologist on a regular basis and maybe one neurologist also? This is how it works in Australia. I'm not saying that we are always happy with it all but I wondered why it's so very different in GB.

Thinking of you.

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Thank you, I think the difference in the U.K. is we are short of Rheumatologist. There are only four now covering three hospitals as there are two vacancies. My Rheumatologist of five years has left the country. I refused to see one Rheumatologist as I had a problem with him. I did try to see one of the others but their caseloads were overcrowded so I was very happy to have this Doctor until my second consultation xx

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CecilyParsley I'm so sorry this is such a big issue and judging from many other comments we are not alone being in the "too hard" basket. It is so frustrating and lonely at times isn't it? My diagnosis is Sjogrens as well as other autoimmine probs but as previously mentioned Orthostatic Tremor is my most difficult day to day living.

I'm so encouraged by this group...even if I don't actually have lupus! (I don't think!) Sometimes a label helps but it doesn't actually solve anything does it? Take care and know that the group is here.

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Yes you are so right, a label only guarantees what sort of care you get but often does not deal with the symptoms and day to day living. It is isolating, lonely and at times all consuming. I was less concerned about this Rheumatologist stating I did not have any autoimmune issues than the inference I had managed to will myself into imagining oedema and vision loss. He was suggesting that my condition is self imposed and that I am both attention seeking and hysterical. The more I got upset by it and argued the less lucid and measured I became therefore reinforcing his diagnosis. This group is amazing. I am so grateful for the support, well wishes, advice and information xx

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yes that is how this thing is played out so many times, get upset well who would not when feeling so unwell and undermedicated. walk in our shoes. xx

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That is very true Louise. We get 10-15 minutes if we are fortunate to convey our concerns. Concerns built up over months of health issues. If we come across anxious, it is not surprising.

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Dear CecilyParsley, the latest study of lupus diagnosis carried out by the Lupus Foundation of America in 2017 found that 41% reported being misdiagnosed with something other than lupus at the start of their journey. This despite the fact that some 34.5% were reported as having "severe symptoms", while amazingly, 13.3% had symptoms that were "life threatening". Astonishingly, the study also reported that over half the sample of over 3,000 people had been told initially that there was nothing wrong with them or that their symptoms were psychological. With my very best regards, Lily

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Yes I can understand why it is so challenging for doctors to diagnose. The symptoms vary in each person and can appear random . A Haematologist I saw a year into my Lupus diagnosis told me more about the great pretender than any Rheumatologist ever has. He said there will be times when you think you are going mad but do not be fobbed off xx

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You are more than well within your rights to not only feel a bit depressed, but angry. WTH? I am so sorry you are going through this. People treat autoimmune disorder like they are a walk in the park or something that is easy to adjust to. It isn't, public and health care education needs to be instituted to deal with this glaring issue...*hugs* to you

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Thank you so much, my Optician was astounded that it was said that there was nothing wrong with my eyes and that the loss of peripheral vision was an hysterical reaction to the Hydroxychloroquine increase. Xx

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Whaaaaaaaaaaaat? Oh, hell no baby! Hell no! That is... I am ready to jump into the fray with you. I am so sorry that is happening. Is there any agency or group you can go to in order to address grievance? I would be thinking lawsuit at this point. You could suffer serious harm from this lack of action and care. Getting mad for you! *huuuugs*

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Apparently by immediately stopping the Hydroxychloroquine the oedema dispersed? I need to have my peripheral vision tested again in three weeks to see if there is an improvement but as the Optician said it was the oedema that was affecting the sight so it should be restored. The Rheumatologist said the Optician was wrong and refused to accept that she or I saw any oedema. My carer was with me and told him we saw it on the screen. He responded an Ophthalmologist saw the scans and said everything was fine and an Ophthalmologist trumps an Optician any day? What he would not accept was that the scan the Ophthalmologist viewed was five days later than the original scan. Xx

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Well, I am certainly glad someone is advocating for you--do keep us posted on your progress sweetheart...

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Thank you ❤️Xx

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Hi. I'm so, so sad that they put you through this. Unfortunately, you are not alone in being treated appallingly by 'specialists'. In my case, a hepatologist recently told me that all my symptoms were caused by excessive alcohol intake (~20 units per week, to which I've always admitted). Granted, my LFTs have been out of range on occasions, but ALL my symptoms - really!? In my opinion - for what it's worth - many of these 'specialists' look at blood results in isolation and don't treat the patient holistically. And, the more arrogant ones spout off their narrow minded opinions without rightful consideration. I also felt like contacting PALS to complain, but didn't because I need treatment and I'm worried about how my rheumy would view this when I see her for review next month. I don't have any answers but my heart is with you. You are NOT going mad or imagining symptoms!! Take care. xxx

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Agree 100 percent. Treating and diagnosing autoimmune disorders is not an exact science yet and doctors like to feel as if they know everything, so when uncertain, they blame the patient. I can only hope that one day we can form a collective voice that raises to get our issues addressed fairly and with due compassion.

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Yes that would be amazing. If you break your leg then you get specific treatment and respect and yet it seems that autoimmunity is treated with suspicion and patient blame very often xx

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Oh I am so very sorry Meg. I agree these so called experts have the power to help, support, enable, encourage and yet sometimes their own arrogance gets in the way. The second Rheumatologist I saw took me off all medication..I was then on 46 tablets daily. I became so unwell I was diagnosed with low grade lymphoma and scheduled for an open chest biopsy. I asked for a second opinion and went to St Thomas’s who confirmed Lupus. The Rheumatologist rang me incensed. He actually said when St Thomas’s get rid of you and they will you can come back to me and I will again take you off the medication because they are wrong. Sheer arrogance!!I totally understand your fear about making a complaint, I feel that way too at the moment.I really hope that you are treated with respect and consideration in your next consultation. Hugs to you xx

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wow speechless at what im reading , sending a big hug xxx

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Hi. Thank you for your kind words, this site is so supportive. As you say, it's a pity that some of the consultants don't take the same kind, caring approach! It may take a while for you to recover from this, but hang on in there because YOU are more important than them. It will come. I hope you have a supportive GP who can talk you through this a bit? My one is excellent and he did - eventually - help me to put things into perspective. Mind you, I might be knocking on his door after my review with the rheumy! Big hugs back to you. xxx

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