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Anyone got any experiences of neurologists not understanding lupus please to share with CQC and hospital management (anonymously)

Hello all, after a few of us had a bad experience at my local hospital with neurologists dismissing our lupus symptoms due to not understanding the basics of the disease, I have finally (after many months of persisting and writing them educational letters!) got a meeting with the medical director to discuss why this goes wrong for so many and suggest improvements for future patients lupus. The hospital rheumy is brilliant and has said it happens all the time and is making suggestions but the neurologists are rather resistant to being educated! The CQC has said he would be very interested to hear all our experiences. I am hopeful that they can include inspecting lupus care as part of their inspection regime if we can raise awareness of how poor it often is. So any stories on here would really help please! x

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I made a complaint in 2016 about a rheumatologist who made multiple basic errors, and refused to investigate symptoms. Like you I found others who had similar experiences.

Initially I complained via NHS England. The initial reply letter denied I was suffering, or that anyone else had concerns. I wrote back with a copy of my new Rheumatologist report and written testimony from others & copied this to the CQC.

The Rheumatologist no longer works for the hospital. There is a new rheumatologist team in place. Others report undergoing additional testing, & some have told me their GP is aware of the issues.

I've no doubt the CQC had a hand in helping bring about this change.

Best of luck,

Sarah x

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Well done for instigating change - sometimes it’s so hard to do when we feel ill but it’s the only way those who come after us don’t suffer the same lack of knowledge - although a bit more training in the basics of connective tissue diseases in med school would help 🙄!

I’m so impressed with the CQC so far, they said they can do spot no notice inspections now and it’s stories like these that they can take action on. They also said that the hospital complaints process - probably like yours to NHS England, deters people from complaining and for every 1 that persists and gets some change, 20 drop out. I’m sure this is especially true with lupus as we’re all too exhausted and know stress worsens our disease.

X

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I am heartened to hear that the CQC are taking these matters seriously and acting where there is good evidence.

I went into this process with my eyes wide open knowing that it would be difficult. I was well aware that the initial reply would be a denial, would try to blame me in some way, & would tell me they had received no other complaints regarding the individual. I knew this because this is the standard tactical response by most NHS institutions.

To counter this I first purchased a copy of my medical records (hospital & GP) & ensured the letter only included things I could substantiate. This did mean that there were some things I had to omit. It took several months to draft each letter & I found it emotionally draining, but also surprisingly cathartic.

I am a firm believer that change comes about by pressure applied from several directions over a long period of time (us, charities like Lupus UK, CQC ...). Its a marathon not a sprint! Those of us who are able & willing to complaint and follow it through, should do so not just for ourselves, but for those of us who aren't able to do this.

You have my total support & I suspect that of many others here.

Sarah x

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Yes exactly - I think if we’ve got the energy we must do our best. That’s very wise of you to only include things you could fully substantiate with your records. The neurologist I saw changed some of my results from abnormal to normal and altered a clinic letter (so my GPs and I have a different one to that on my records - not sure how he thought he’d get away with that when we can access our records these days) then blamed his poor secretary when another consultant sent a letter saying actually the results were very abnormal! All very political because the rheumys were trying to educate the neuros but I’m heartened by your experience that change occurred. X

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Well done for reaching the medical director, and keep us updated on how the meeting goes! xxx

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Hi Melba, I had a recent experience with a neurologist who I hadn’t been seen in clinic before. She was very thorough on the physical exam and although she seemed to take copious notes, I felt that she did not seem to listen to my summary of symptoms that led to my UCTD diagnosis. She was convinced that my extremely painful left arm and hand weakness was due to tennis elbow! She asked me if I had been windsurfing or rock climbing 🤦‍♀️ and I explained that I don’t participate in these sports, and only have the energy to do mild exercise due to constant fatigue! She then asked me loads of questions about Parkinson’s Disease which I started to feel alarmed about. I came away feeling that the appointment was a complete waste of time, slightly distressing and that we didn’t get to the bottom of my arm problem. I googled her afterwards and her area of interest is.......yes, you’ve guessed it.......Parkinson’s! By all means use this as feedback to the CQC, if you feel it helps in any way xx

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Oh dear, it’s very frustrating and upsetting when we don’t feel listened to and that they’re following their own agenda rather than fitting the diagnoses with the reality - and how many people with lupus can do rock climbing etc?! Did you get a reasonable clinic letter from her with anything useful? I have read on here that sometimes the letters do not reflect the consultation.

Has the arm pain improved at all or have you had any help getting to the bottom of it?

X

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Yes indeed - she seemed to have her own agenda and as I didn’t fit in the PD box, case dismissed! At one point I actually felt she had the wrong patient’s notes in front of her, or I was in the wrong clinic!! Her suggestions of high energy sports were staggering and clearly not empathetic comments to a patient with a chronic and sometimes debilitating condition! The clinic letter reflected the appointment in that I didn’t have PD and a diagnosis made of tennis elbow but no suggestion of further investigation into the arm pain or reference to my UCTD. I put the whole episode behind me and bought some CBD oil, which seems to have helped with the pain (and other joint/muscle aches into the bargain) so just ticking along with the aim to mention arm pain at next Rheumy appointment to see if he can recommend a Neuro with knowledge of CTD’s. Thanks Melba, actually recounting the experience has made me feel a bit better as I did get upset about it at the time. Xx

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Yes I think sometimes it helps us to talk about it and I can’t believe how they think we can do high energy sports when we’re sitting in front of them so fatigued and in pain?! I suppose no one can understand the fatigue/ pain unless they’ve experienced it? I have a GP who has lupus herself which is obviously sad and rubbish for her but very helpful for me because she can understand on a far higher level than the others. I think we need a list of neuros with knowledge of CTDs as it seems to do more damage than good seeing ones who don’t know or want to fit us into boxes they’re familiar with - even if it’s not the correct box at all and bits of us clearly hanging out, they still like to try and squash us in anyway and shut the lid! 🙄 xx

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This might be a red herring HW...but I had a neurologist diagnose tennis elbow when I had a painful elbow & lack of power in my arm..... Luckily my physio suggested I have a scan of my neck & it ended up showing damage in C/spine vertebra 3/4/5.I was then referred to a neuro surgeon who fixed it.......that was 24 years ago....prior to any signs of any AI disease. The only downside is I have developed OA either side of C3/4/5.......but it is not a major problem.

If you haven't had your neck at least Xrayed it might be worth suggesting?

Do hope you get a correct diagnosis soon.

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Hello AC, thank you for your reply, most interesting. I do have a very painful neck aswell, but not had an X-ray or scan for about a year. I will get this investigated too. I did mention this to the Neuro but she completely overlooked that too!! Xx

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The idiot neurologist who diagnosed me was a leading light in Harley

Street....try seeing what your physio makes of your symptoms.

Have you had any trauma to your neck...mine was the after effects of whiplash a couple of years earlier. I had walked around 2+ years with a broken neck.

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Yes I got whacked on the back of the head and neck by a wave in the sea last summer - I think this precipitated an almighty great flare (having had unexplained neuropathic symptoms for the previous 25 years) which led to a series of appointments with various specialties with last stop at Rheumatology 10 months later and a UCTD diagnosis. The head & neck x-ray and scan were part of that diagnostic journey which yielded “wear and tear”. Worth a revisit though, as I have not been pain free in the head and back region since last summer, thanks for the suggestion x

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Push for an MRI......that was his mine was sorted....mentioning pins & needles & numb fingers usually gets results.

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Thanks AC, well worth pursuing indeed

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I think sometimes the physios take more time with us and really listen so have more chance of getting it right?

X

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Hi, I am Diane in Québec city Canada, my rhumy is fantastic, but my neurologist is a nice person but I have the impression that he does not have a clue about lupus. I have peripheral neuropathy and take lyrica for the pain and tylenol extra between doses but that does not do anything for the neuropathy Anybody got a suggestion. Thanks for listening

Diane XX

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Hi Diane, I think some people on here have peripheral neuropathy so may be able to help. Is yours permanent? I get neuropathy symptoms in a lupus attack but the pins and needles etc gets better on steroids and haven’t had at all since having methotrexate. What treatment are you on? X

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Two experinces with neurologists many years ago, nothing positive to report. xx

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Thanks Louise, Did they try and diagnose? X

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Fibromyalgia, dispite several symptoms that would not be covered by that diagnosis, including seizures. It was a very long term ago and things have moved on since in the medical world as has my diagnosis. . One just looked at my notes and said "ah yes I see you have been previously told you have fibromyalgia, its that or chronic fatigue, most likely. xx

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Your discussion hits a nerve with me, and here is why:

In the early 1990s my chronic childhood onset lupus-related neuro cerebral signs & symptoms became so severe that my GP suspected MS & referred me to neurology at our small local NHS hospital for testing. At the time, both the NHS & I were unaware i’d been diagnosed with lupus as an infant (my lupus-related issues were managed by my mother & GP in my birth country (the USA) until the late 1970s when i left at 21 years old to work & settle in the UK. I was led to believe i was just “sickly”)

By the time i was preparing for this neurology appt, multisystem debilitation had progressed enough to make me relatively housebound. my husband, his family & I felt certain there must be some profound underlying cause, so we were actually relieved to finally be tested for something like MS. And i nervously prepared a 2 page outline of my neuro cerebral signs & symptoms for the neurologist. At that point i was chronically depressed and had become totally cowed down by GPs assuring me all my chronic multi-system issues were “normal” health problems. And i was naive enough to trust that a suspicion serious enough as to result in MS investigations would mean my case was finally being looked at more closely.

In fact the opposite was true: the neurology consultant barely discussed my case with me, while I was too shy to do more than cower. He barely glanced at the sheets i’d prepped. I was called back in for first line MS tests. I never heard more. eventually i hobbled in to see my GP about yet another infection or some other characteristic issue, and asked if he’d heard from neurology. He told me i’d tested neg for MS, and that was that. I was so beaten by the system that it didn’t even occur to me to question further.

10+ years later my long time pain consultant began to suspect an underlying AID and had my GP refer me to a brilliant lupus expert rheumy at a university hospital in a neighbouring catchment area. She closely scrutinised my health history + conducted a thorough physical examination, clincally diagnosing SLE at our first long appt + ran blood tests including one that included the word lupus. I’d never even heard of lupus. When i mentioned that word to my mother, she admitted having kept the infancy diagnosis secret.

Before long my chronic neuro cerebral were damping down in response to my lupus meds...and i was realising: 10+ years earlier, had that neurologist been more SLE-aware, and at least skimmed my 2 pages of info...he really could’ve thought a bit harder about my case and referred me to rheumatology for investigations into something systemic underlying my neuro cerebral stuff..., or at least advised my GP to do so. Had i been diagnosed 10+ years earlier, perhaps my debilitation would be less profound now. Maybe i wouldn’t have had to retire early on health grounds. I might not be stuck on Enteral Nutrition at 65... Etc etc

Enough said. Apologies for going on & on. I hope something in there is useful. thanks vvvv much for everything you’re doing to effect changes in the way these things are handled

🍀😘🍀😘🍀😘 Coco

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Coco — I can imagine you would be pretty angry to think the neurologist should have diagnosed your lupus at the initial consultation. I am wondering if there is another way to see this. Your GP sent you there for a thorough evaluation, not to rule out one particular disease. Your lupus tests may have been negative at that time, which was causing them to go in the direction on MS. From what I understand, lupus and MS are nearly indistinguishable on MRI at times. So there are many things that are taken into account. I understand your frustration and angry about certain clues not being headed sooner and I have certainly felt that way myself. But I have found it helpful and more realistic to have the perspective that some symptoms and some diseases take time to declare themselves in a way that is diagnosable. It is so unfortunate for people with autoimmune diseases, but sometimes even the best doctors cannot distinguish between the complex diseases. What we need are better diagnostic tests.

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Can a diagnosis of lupus stand as legit as one given or confirmed by Rheum? Just wondering. Thanks.

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Maybe you know this website already, but, in case not, here is a good analysis of the situation re diagnosing lupus...it’s put together by the top US lupus specialist Dr D J Wallace:

uptodate.com/contents/diagn...

My impression is that, these days, medics of any speciality who suspect lupus in a patient would tend to refer them to rheumatology for examination & lab sample testing to determine whether the patient meets official diagnostic criteria.

But immunologists also can & do diagnose lupus, eg in patients like me with a Primary Immunodeficiency Disease....and hot shot GPs can & do diagnose lupus, eg mine in 1954, but these days would normally then refer the patient on to rheumatology or immunology for confirmation of diagnosis + ongoing care, with details confirming the way in which the patient meets diagnostic criteria. This is how my case was handled when i was a toddler...way back in the 1950s when diagnosis was no where near as sophisticated as it is now...but my rhuematology & immunology chiefs both think my history confirms remitting & relapsing mild to moderate infant onset SLE

The appalling fact is, that there are lots of GPs & rheumies out there with vvvvv little experience of lupus (and lots of experience of more commonplace conditiins like rheumatoid arthritis & osteoarthritis) who think lab test results are the only criteria necessary to official lupus diagnosed...and these are the sort of medics who don’t realise lupus patients like me can be officially diagnosed although we are seroneg but do meet other immunologic lab test diagnostic criteria eg below range complements

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Spot On: this is exactly how i’ve come to look at this during my 7 years here on forum since my lupus diagnosis was recovered in 2011...thanks v much for this validation and understanding: means a lot to me.

To make things more tricky, my case is complex because i’m unlikely to ever have been able to produce antibodies due to what my immunology chief calls Primary Antibody Deficiency Disease...which was irrelevant anyway back in the 1950s when i was first diagnosed clinically because autoantibodies were barely understood in those days..anyway, with such early onset lupus, i was unlikely to have tested pos for anything in my late 30s when my gp & that neurologist were considering my case, although i definitely met enough other official diagnostic criteria for SLE

And there are several other tricky angles to this, eg had i not been so cowed, compliant, stoic + uncomplaining, & so conscientious about lifestyle management, maybe my mother might have mentioned the lupus earlier. In 2010 when she blurted out: But, dear, you’ve always had lupus! My life began anew...and now, although i’m stuck with a significant degree of multisystem debilitation (especially the neuro cerebral), thanks to my pain consultant + my true detective immunologist & rheumatologist, am feeling generally “better” than i have since before i left “home” at 21. It’s been a crazy life! And i feel very lucky to be able to process it all here with help from you wonderful people

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KayHimm I rather think you miss the point here. Of course neurologists are trained to look for neurological diseases or causes of nerve entrapment rather than rheumatic diseases.

So if they can’t find a primary neurological disease then what should they do?

Well I would say that what they absolutely should NOT do is diagnose a psychosomatic disorder such as CFS or FND. They may genuinely suspect one - but lots of us suspect things but we don’t usually act on them - let alone diagnose them purely on the basis of excluding only about half the possibilities?

What they should do is write back to the patient and GP explaining that they can find no neurological disease but that this doesn’t exclude one showing up in future or exclude a whole host of conditions that may fall under other specialists such as oncologists, rheumatologists, endocrinologists or psychiatrists.

They also need to remember to explain that we are still at the foothills of the mountain where genetic conditions such as EDS and mast cell activation disorder are concerned so these might be worth pursuing with the relevant specialists too - particularly if there’s history.

This is how good professional will operate anyway but there is a desperate shortage of neurologists in the UK so they may not be good and may feel fairly invincible!

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That would the absolutely perfect way for them to approach it twitchy. Maybe we could run a course between us all for neurologists?! X

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Yes - but only if handsomely paid lol! Horrifyingly I think ours are all being handsomely trained to diagnose as many as possible with functional disorders. 🙄😱

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I’m just laughing imaging the sight of a row of us, with our varied neurological manifestations, giving them a presentation!! What an education. Between us all we would have - The twitching, the numbness, the autonomic issues, the incontinence, the hallucinations, seizures etc etc - and most of us having to lie down half way through with the fatigue or pop pills for the pain 🙄

Wonder what they’d make of us en made? Let’s see if we can get an audience with your new functional BFF?! I’d come up to Edinburgh for that - especially if we could time the meeting for the festival 🙂 xx

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Ha ha with our array of symptoms they would have the fluorescent FND badges out for us before we could even blink - let alone book the train Mel! This is the team in the hospital which coined the whole functional thing after all.

And you’d be getting the double badge what with coming from Englandshire! But after trying to train the functionalists we could at least all come back to my studio and stitch all of these deluded neurologists emperor’s invisible clothing complete with dunce’s caps?! X

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😂😂 oh you are funny, I think laughing is the only cure! Although ‘inappropriate laughter’ is one of my documented neurolupus symptoms in a big attack so I have to be careful laughing too much with you guys or my husband and children call my rheumy to tell tales and feed me steroids!! 🙄😂 it’s a bit annoying actually as I’ve always had a tendency to inappropriate laughter so it’s not always a good sign of an impending brain attack!! X

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Well I appear to be developing bipolar tendencies now according to my husband.

I do think us Sjogies tend to a very dry sense of humour for obvious reasons. But I reckon that one day I might be able to sue the socks off the NHS for actually giving me a functional neurological disorder. After all they once gave me a hospital born infection that turned into Sepsis.

Maybe I’ll threaten neuro ducking with litigation for potentially converting me? Quack Quack🤑😈👹!!! X

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Symptoms of FND - Wiki

“Limb weakness or paralysis

Blackouts (also called dissociative or non-epileptic seizures/attacks) – these may look like epileptic seizures or faints

Movement disorders including tremors, dystonia (spasms), myoclonus (jerky movements)

Visual symptoms including loss of vision or double vision

Speech symptoms including dysphonia (whispering speech), slurred or stuttering speech

Sensory disturbance including hemisensory syndrome (altered sensation down one side of the body”

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Which are also symptoms of all sorts of other things including neuro Sjögrens and neuro lupus?! Is that article written by your Edinburgh man? 🙄 x

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No it’s a Wiki link on FND actually but that’s no surprise as he is a professorial cult leader with supreme world eminence on FND now. He probably owns all domains referring to FND. David Koresh eat your heart out!

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It does sound like there is a big problem with neurology in the U.K. that extends farther than we autoimmune patients experience here. In the U.S., we have a lot of specialists but neurologists have not focused adequately on autoimmune disease. It is a big area. After reading Melba’s post and reading a bit, it sounded like the situation is changing. But it is very new. Looks like the sub-specialty training for autoimmune neurology just began in 2016. From my perspective, this will be major for people like you. Right now there is no sub-specialty in any area that focuses on autoimmunity. If you had a neurologist with additional training and doing research in autoimmune neurology, you may not have had your terrible experiences. So maybe I am missing the point. But I think a lot of the poor experiences with neurologists patients have is because the neurologists were not properly trained. The new training is a statement to advances in the field and the need for better patient care.

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Yes definitely, they sound just right for us! X

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Oh Coco, completely understand the trauma and what ifs from that. If you’d felt he’d given it his proper attention and put in effort and compassion to try to get the bottom of it, yet not succeeded, it would probably feel very different than the very quick dismissal without listening? I think that’s why your Rheumy Department is so good, the amount of time, thought and LISTENING that happens at that first assessment appointment is amazing isn’t it?

Hope you’re picking up a bit from the broken bone induced flare? Xx

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Thanks melba: this is it! But, as you’ve pointed out, neurologists don’t seem very lupus aware...and they really could at least be a bit more informed & alert...we seem to get the best from a AID specialist research neurologists, eg after one of these gave us a presentation several years ago at my univ hosp, i put my case to him briefly and asked whether i should push for a rheumatology referral to neurology..he urged me to save this for when/if my lupus meds are failing to control your neuro cerabral manifestations, and my rheumy agrees. Plus: soon immunology is starting me on immunoglobulin G replacement therapy, which may well help manage these manifestations...so, am playing a wait ‘n see game

Thanks for asking...the neuro cerebral flare triggered by that fracture took a few weeks to settle, but it finally did...Just about when my sacroiliitis + hEDS sacroilic subluxation stuff decided to act up big time giving me another 3 weeks of sheer hell...i hyper-metabolised A&E’s morphine, but finally this business is just beginning to show signs of seriously cooperating with management, thanks to my GP trying me on a high dose long term new generation prescrip NSAID - but this NSAID is triggering extra enteropathy flaring down below despite PPI..so, although have been able to ease myself back into a bit of forum activity, am as unreliable as ever...sleeping this off when not busy seeing my GP & pain consultant, doing physio etc etc...never a dull mo....anyway, today i managed to drive myself to cambridge for gyn oncology appt: feeling pleased!

Hope things are going well at your end...am very sorry to have been so out of touch lately! XOXO

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Oh gosh, sounds very tough 🙁 but pleased you managed to get out 🙂 even if it was to the gynae! I expect we share the same gynae oncologist too- Mr B? - he is great although I always end up saying or doing something silly, probably because of trying not to be self conscious! I’m quite rubbish at the moment too, GPs have said I have to go to hospital with haemorrhagic bladder - not sure if it’s kidneys or bladder bleeding but has being going on a while with a bit of blood then suddenly loads 🙄 It’s always something with lupus!

Take care Coco xxx

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Thanks! Oh melba: am vvvv sorry...that kidney/bladder stuff can only be MEGA dreadful😧.....My gyn onc is Mr C 😉...haven’t encountered MrB. Take care...everyone NEEDS you 😘🍀😘🍀

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Thank you! Yes I must admit I’m a bit phobic about anything being poked up my urethra! 😬 Had an op there for my lichen sclerosus when I was young and they had a bit of an accident with the catheter 😱 so am currently refusing and hoping a big dose of steroids as my body loves steroids!

Ah I expect all gyn oncs are lovely, probably have to develop a kindly reassuring bedside (front bottom side! 😂) manner. Xxx

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EEEEK...me too...i’ve been vvv lucky to have our urology chief (a guy) pass me over to his female colleague who was my idea of the perfect iro surgeon...she performed rigid cystoscopy under GA AND kept me in overnight to make sure i was ok...this when my bladder cancer scare was live a few years ago...and was at the same local hosp where my LS was diagnosed and the biopsy op didn’t go smoothly...i didn’t realise we have this sort of stuff in common...i wish none of us had any of this going on

I think you’re right about gyn onc...walking into that clinic feels like heaven: everyone is so kind & attentive & gentle & funny too. Yesterday i told the nurses: you’re my fav clinic, the sweetest of all! They were v surprised and said: we thought all clincs are the same! I said: no way!

🍀😘🍀😘🍀😘

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Thanks Coco, You have summed up how I feel about my neuro visits too. They did not try hard enough for sure. xx

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I feel a bit like twitchy that the functional/ fibro label is often just laziness and like you say, lack of trying to get to the bottom of it. I had a neurologist spend 10 minutes with me and after my first sentence (of a page of neuro symptoms) said ah yes this is all migraine don’t worry! I asked him to put the list on my notes but I received them recently and he clearly put them straight in the bin without reading them because when I gave exactly the same list to rheumys and other neuro, they said it clear neurolupus. Like you I had things that just couldn’t be attributed to migraine/ functional/ fibro - including hallucinations etc but a mixture of me being too embarrassed to highlight it (I’d put it in the middle of less embarrassing symptoms in the list! 🙄) and him just assuming it was migraine and not being bothered to look further or listen meant it was missed. I do worry a lot about how many people it’s happening to, who aren’t get any treatment or care for ‘fibro, functional, migraine’ etc when it’s underlying autoimmunity that could be treated and give them much better lives.

X

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Yes I agree it is a worry and sure happening to women more than men. All we can do is keep raising awareness. xx

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I think there may be a trend toward neurology departments creating special programs in the area of brain autoimmunity. If that is true, it would be a big help for us!

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Melba — you might find this interesting: « Autoimmune Neurology: A New, Rapidly Evolving Subspecialty. I wish I knew how to post the article. One of the things that is stressed is how great the need for expertise in this field is. Thanks for your post. Maybe some people will benefit from finding centers that have autoimmune neurology departments.

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Hear! Hear! That would be amazing - to have autoimmune neurology depts, accessible to all....perhaps one day....🤞

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Where do you live? We have them in the U.S. I go to one. After the post, I checked, and there are others across the country. I am looking at guy in London who specializes in « systemic inflammatory diseases, including systemic lupus erythematosus. »

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Without meaning to offend, it might be worth mentioning names on the forums. What you read is not what you actually get in my own experience. You read wonderful things and if you assume that's what you get, you might not be so happy.

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I’m in the Midlands in the UK - any outcomes of your research would be most interesting to read! Thanks for taking the time

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Unfortunately I think the neuroimmunologists are only focused on MS. That’s my and others with lupus experience of my local neuroimmunogy department. They were very clueless about lupus and didn’t even know what reduced complement meant in lupus patients. Almost all their research and money is allocated to MS though so time to highlight that people with lupus need neurologists who understand our disease too! X

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This is a new field called autoimmune neurology. At least in the descriptions, they emphasize other inflammatory diseases. As I said to another member, there is a London neurologist who specializes in lupus and other inflammatory diseases. Don’t give up hope. You are correct that MS has been speciality training in the past but this is different. There are centers across the U.S. now and I noticed neurology specialty training in autoimmune neurology in academic centers. Sorry I don’t know how to post the link, but the article states that “unlike neuroimmunology, autoimmune neurology’s focus is much broader than multiple sclerosis.” You have lots of support among forward-thinking neurologists that more training is needed in autoimmune diseases!

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Ah that sounds like the perfect discipline for us - thank you, will check out the article when I’m feeling better (lupus - or immunosuppressants - has turned a small frequent amount of urinary bleeding into a bladder haemorrhage today 😬). I haven’t given up hope as I have a great rheumy who has treated my neurolupus very quickly and well but I do worry for those who see a neurologist before their lupus is diagnosed as think it may well be missed - like in cocos case and many others. They need to be taught to look more deeply, broadly and with more time and open mindedness as we are different to what they are used to? X

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This could be the article, melba:

medscape.com/viewarticle/89...

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UK is nowhere near some specialist centers in the US that offer that type of specialist care/neurology. It's a very minority interest in the UK as Melba's thread appears to be about.

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You may be right. It is hard for me to get a perspective because I am only seeing programs on the internet. It does look like the U.S. may have more centers in autoimmune neurology, but the UK does have researchers in the field. Maybe it is in the near future.

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There are researchers (that you see on TV). That, you can count in one hand, how many of us are they? Hardly enough to go around.

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Very good point but hopefully by researching this they can educate their colleagues and (although painfully slowly for us) things will improve - certainly for the next generation. Have you had bad experiences yourself autumnsonnet? Hope you’re ok. I’ll message you later. I’ve missed the meeting today anyway as in a flare 🙄 rubbish disease stops us even talking about inprovements! X

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Melba, all the good ones who were interested in this particular condition were either driven out by NHS accountants or faced NHS redundancy. I explained the reason why. Treating autoimmune lupus does not exist, as you correctly stated, it's MS dep you would normally end up in.

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You may be right. It could be that without the funding, the U.K. is not offering advanced training in the field of autoimmune neurology. The U.S. does continue to do the bulk of the world’s medical research. If it is a new field here, it may translate overseas.

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Melba, is it okay to ask which Neuro dep you are referring to? Which area, I'm curious, could you pos. PM me? A great thread!

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Is this the article kay:

medscape.com/viewarticle/89...

Thanks for the tip!

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Yes! Did you note the ending? Others doctors are emailing these specialists for help. So there is clearing an unmet need. Of course, patients could have told them that.

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YAAAAAY! Thanks again!

And: Absolutely...time & again over the past 7 years i’ve run into this need for specialists in the AID angle within depts to be brought in on various multidiscipline investigation ordeals i have to endure...each has been so Venn diagram! Eg:

- MDT made up of ENT + max fax + Rheumatology + immunology requiring assistance from an AID ENT expert

- MDT made up of urology + gyn oncology + gastroenterology + rheumatology + immunology requiring assistance from an AID/connective tissue disorder enterology expert

Etc etc

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Trust me, I have been furious with my doctors over the many years for not figuring stuff out sooner! There may have been times when it was a true “miss” but most of the time, like what you described, it is just the complicated nature of autoimmune disease. And you are much more complicated than I am. Neurologists are known by doctors to be weird. They have not been that helpful in the area of autoimmunity either, as they seem to have focused on stroke, PD and MS. But that seems to be changing, at least in the U.S. About the only good thing we do these days is medical research, so maybe the American autoimmune neurologists will come up with better therapies. I do think in your case, had a good neurologist known about your childhood lupus, they might have put pieces together. But it is so hard to say. Migraines can cause such crazy symptoms — and then they can turn out to be autoimmune-related years later. You seem to have an excellent team of doctors now. Maybe ask them if they are planning to add an autoimmune neurologist!

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Hi Mel - a bit out of sync and don’t actually know what CQC is but guessing this only applies to English Lupus sufferers not Scottish Sjögren’s sufferers like me?

My account of gaslighting parts 1 and 2 describe problems I’ve encountered with NHS in relation to how misunderstood rheumatic diseases can be in specialisms other than rheumatology, particularly neurology. In fact I have found that some rheumatic diseases, particularly Sjögren’s and Lupus, are even ignored or underestimated or misunderstood by rheumatologists - let alone neurologists!

Do please feel free to anonymously snatch any passages relating to my accounts of being misdiagnosed or misunderstood or mistreated if they are of any use to you. X

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

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Hi twitchy, no it definitely doesn’t exclude Scottish Sjögrens sufferers! We’re all in the same boat and need similar help, in fact those of you in Scotland, Wales largely even worse off. Although the CQC is unfortunately just England, not sure there is a Scottish/ Welsh equivalent? I spoke to a top lupus (and Sjögrens - although very focused on dryness 🙄) professor yesterday and he said raise awareness all the ways we can. He hasn’t heard about the South Wales issues but was very sympathetic to their plight and thought it unfair and wrong.

You’ve written and communicated your ‘functional’ thoughts so well, I hope someone, somewhere takes notice. Especially when you hear stories of those who aren’t protected from the neurologist’s dismissal by having an already diagnosed autoimmune disease and good support elsewhere. That poor lady you spoke to your MP about 🙁 How can anyone leave someone suffering like that? Xx

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This goes back to the Victorian era, probably, someone commented on (as I agreed) deeply ingrained in history/tradition, especially male neurologist's (or cardiologists) psyche, which could also go back to "witch hunt". Sexism in medicine, Neurology & Cardiology (that the media covered extensively for the past decade), in particular, is deep and widespread. The problem I often find is that "their NHS managers don't understand a thing about what Neurologists are doing, so long as they are discharging patients promptly to cut the cost, they do nothing. In fact, anyone decent (Neuro/Cardio etc) gets "punished" (read, "fired") by their NHS cost-counting managers. To their eyes, good doctors helpful to their patients are complete failures as they cost too much, too many patients staying not discharged quick enough.

After all, accountant bosses (who had no clue on the basic medicine) will leave things to the "Doctors", their cash cow, that "process" over the NHS conveyor belt like a meat factory (they chop and slice, without enough thought). This whole management chain of command fail so many autoimmune patients in every way than you can begin to expect. Which Neurology department had a decent complaint procedure? Likely, unheard of. There is a procedure in place, but effectively, unworkable for the patients.

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My theory is that it is such a very beleaguered specialism with far too few medical students choosing neurology - that those who do have a lot of power and the potential to misuse that power then is obvious.

If I’d written a letter of complaint to any other type of consultant I’m fairly sure they would have replied. But the one I wrote to was so secure in her job and so arrogant as a personality, that she didn’t bother. And worst still she knew no one, including the hospital complaints team or GP even me would bring her up sharp. And I could tell by my GP’s expressions and things they have said that this is no surprise to any of them at all.

So she was right in her confidence over the power she wields - and probably her colleagues too. And as for the man in a neighbouring Scottish hospital who coined the term FND as the latest acronym for one of Freud’s conversion disorders - who will discredit a man who’s books on functional disorders are translated into 15 languages and has taught many neuro ducklings how to quack FND and get handsomely paid for it?? No one.. apart from us?! X

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Legally, it's the government's fault, allowing that power to prevail regardless. Doctors are "untouchable". Patient care? I wonder how many Neuro/Cardio are concerned by "THAT"? So long as patients aren't dead, they can pretty much get away with anything, and that's my own experience and what I read on this forum confirms it every time. Would they lose sleep over that? I doubt it.

They might be far more worried about how much NHS pensions they had accumulated so far and if THAT would be enough for a decent retirement. Are they worried if some of us are left penniless, crippled, lost our minds, had a sudden death etc? They are thick-skinned, they dissected cadavers, not just little frogs. NHS gave them the untouchable status so long as patients aren't dead and all the "basics" are met. Helping patients isn't in their contract. That's too "old school" and too nice.

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Yes I think that’s the saddest part, we just need to be cared for and feel they care. I’m sure very many do and I’ve personally met some great ones but having seen a lot of neurologists and rheumatologists I’ve noticed a difference (in the ones I’ve seen) that the rheumys are more likely to listen and care and the neuros are maybe too arrogant (or too scared to admit they’re out of their depth?) to take the time to get it right with us? Although having said that I saw a lovely young neuro recently who spent over 2 hours with me. I’ve never been listened to so thoroughly or received such a comprehensive, long helpful letter. What I loved was that he admitted several times when he didn’t know something. No one can know everything about our weird diseases - it’s the ones who pretend they do, don’t value us as equal partners and make things up that are the danger. I think we need a list of good neuros/ cardios etc that understand autoimmunity like we have the lupus centres of excellence? X

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I’m more cynical about things improving for any of us in the UK now I’m afraid. I think it’s only going to get worse because the extra funding is all going into Diabetes 2 prevention and cancer and the more common potential killer conditions. To be frank I don’t think it can improve here.

My first neuro was much better then the second one. However he still told me that Sjögren’s always shows in antibodies - so advised me not to bother pursuing a diagnosis by lip biopsy. And he still diagnosed my reaction to tramadol as functional left sided hemiparesis. What is functional about a drug allergy?

I have been told by 3 GPs now, including wonder GP, that neurologists are, invariably, a very strange breed of people. Why would 3 intelligent GPs who also work as hospital doctors, all say this to a patient if they didn’t know it to be true?

After my encounters with neurologists over the past 4 years I conclude that they are just programmed to diagnose anything that isn’t blindingly obvious nerve evtrapment, stroke damage, CjD, epilepsy, Altzheimers,MND, MS, PD or MG as functional.

This is why they need to be held accountable to extra vigilant auditors and inspection teams etc for their diagnostics. X

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This is a very good YouTube video of an academic webinar talk which I think you will find very helpful for your research - if you haven’t heard it already Mel.

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Particularly in this era of a very straightened/ collapsing welfare state, it’s absolutely unacceptable to allow doctors and NHS hospital departments to be so unaccountable.

The neurology department at the hospital in Edinburgh (thankfully not mine) shouldn’t have ever been allowed to invent a new name for what amounts to a Victorian-style conversion disorder. However, not only have they been able to do so, but they have been handsomely paid in research funding and by keeping their salaried posts.

And now this term, FND, has acquired respectability around the world and is being spoken about on BBC radio 4 science programmes in a way that makes it seem so plausible.

The fact that nearly all those diagnosed are women of all ages seems more than coincidental to me but not yet to many of those who receive this diagnosis. Only when they are in A&E and the doctor comes back with a certain expression, or at the GP and same thing happens to their expression when they scan through the patient’s notes to see why they may be having seizures or tremors or both - will it start to dawn in a person that this diagnosis has a very low ranking indeed in terms of referring someone on for urgent testing etc.

And one wonders- will most of those diagnosed have had tests such as lumbar punctures and brain MRIs or blood or other tests for Lupus, Sjögren’s or Vasculitis done?

I very strongly suspect not. See link below on misdiagnosis for further confirmation -no mention of any of our of our organic diseases at all 🤯🤷🏼‍♀️

neurosymptoms.org/misdiagno...

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I’m new to this forum my daughter recently was admitted to hospital due to confusion etc her results have come back from her MRI as some burst vessels and an older brain age. She’s been on a course of steroids which is now down to 5mg for a further month. I’m

At my witts end as the previous hospital had no clue how to treat her and after each course of steroids a new problem occurred hence now her brain. We are now under a new hospital but I’m not clear or sure what help she should be receiving and from who.

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So sorry to hear this. It’s awful when it’s our children and we can’t get the help they need 🙁. I had similar with my son, he had a very rare acute autoimmune disease and it took a months to find a neurologist who understood. We then got lots of support and he eventually made a full recovery but finding the right person/ people (once we’d got the right diagnosis and right person, they then set up a whole team of multi disciplinary consultants and physio etc support)

Does she have a lupus diagnosis and under a rheumatologist? She may need some immunosuppressants and/ or longer on steroids. I’m exactly the same with reducing the steroids (think lots of us are) in that below about 10mg the lupus reflares, especially in my brain. It may be that she needs to stay in them longer but you need the right consultant who understands what’s going on.

If you let us know on here what hospital’s you are near there may be someone on here who has a great rheumy or neuro who will be just what you need. Please don’t despair or feel you’re on your own with this, lupus uk will help and this is a great community with lots of knowledge and compassion and we are with you.

If you’re happy to share her other symptoms/ results people on here might have had similar and be able to provide information and support.

Lots of love to both you and your daughter xx

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MID: i second everything Melba is saying, and have replied to your post (with another question or 2):

healthunlocked.com/lupusuk/...

We are here for you and your daughter: take heart

🍀🍀🍀🍀 Coco

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She’s my big but very little baby of 31 we are now going to Hammersmith hospital, previously West Middlesex

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I’m just catching up on your posts for last month.

I live in Jersey, Channel Islands and it was when I was referred to a neurologist with latest symptoms of painful legs, over a year ago, that he took into account a lot of my medical history, he took more in-depth blood tests, over a period of months, noticed the rash on my face, and I was then diagnosed with Rheumatoid Arthritis and lupus.

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