Well I new possibly having lupus would be hard, coping with the illness is bad enough but then you are also tying to convince the medical profession you are ill and not just a nut case...
well my rheumatologist stated and I quote "you have seen a few consultants and nothing seems to add up, I think you need cognitive behavioural therapy" funny that since when does CBT become necessary for a patient who has had symptoms reduced by treatment they started. ( reducing dose of pred for 3 weeks and plaquenil), luckily I work for the NHS and a mental health colleague of mine was in work yesterday and I told her this, she laughed her head off at the comment and said " no you don't need that, I do CBT and it is not needed for you", so I can confirm I am not mad and I have a mental health assessment to prove it, how many of the doctors who talk rubbish can say that?
So action 2, as I posted in action 1 had made appointment for the private lupus clinic in London but due to cost I am cancelling it, to replace it with an appointment 30 minutes from home at the BMI Sefton with Dr Thompson so im saving a few hundred pounds, second thing is I'm going back to talk with **** my G.P. over what was said and then going to make a formal complaint, as a patient and a fellow healthcare professional I should be treated with respect and dignity, If I don't have lupus then what is it? If I knew that then I wouldn't have to go and see Narrow minded doctors who don't have a clue and are probably mad, least I have the piece of paper confirming im Not hope everyone is doing well, Mark
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It made me laugh, always thought I was a little bit mad working for the NHS. just could not believe how rude and insensitive the doctor was especially after she said I think its post viral syndrome, and I commented what for 17 years?, I think some doctors are intimidated by patients who know their illness better than they do. like most people with illnesses that don't fit the norm, lupus is documented in most of the journals that it copies so many others, so I get its down to the view of the doctor you are seeing to diagnose, but a little respect for the patient with it goes a very long way.
I have learnt to question my consultants and if l think they don't understand Lupus then why are they treating me ? I even politely told one that l knew more than him, he didn't like that at all and just said that i have to understand that Lupus is a very complex disease, l said l obviously knew that and l am the one who has to live with it everyday not you ! Needless to say l no longer see that particular consultant ! You soon learn to be confident with them and demand the best possible treatment. Fortunately my Renal Consultant is amazing.
I know exactly what you mean, I have formed friendships with people on the various forums and quite a few have had the same problem with this particular rheumatologist, im not being funny but you cant make it much plainer than "my brother was misdiagnosed and left for a year without any treatment or support, now he has permanent disability, if it happens to me I will sue and see you at the GMC hearing", must clarify my brother was a very fit young 24 year old who had just passed entrance tests to be a fire fighter in 4 fire services and also the royal air force, then he was struck down with M.S, he was seen by a neurologist who refused to label his condition, hence he had no treatment or physio, he only found out he had m.s when he went for a clinical trial and was told by an m.s. expert, he has subsequently had very good treatment from Walton neuro centre.
I hope to god that I don't have Lupus, why would I want to have it, but I know I am ill so whatever it is it needs sorting as its mucking up my life.
Mark, have you had blood tests and stuff done that indicate Lupus? If your symptoms responded to Plaquenil and Prednisolone surely that is diagnostic of MCTD at least. How many of the Lupus "qualifying" symptoms do you have? Can't understand why no-one is joining up the dots. You also have a family history of auto-immune disesase if your brother has MS. I was diagnosed post viral fatigue for years and CBT was effective for some aspects of that but I still had physical issues that didn't go. I was dignosed on clinical presentation by a joint effort of Neurologist/Rheumy as I have CNS Lupus. The stress of getting diagnosed won't help you either. Hope you get some answers at your appt
all bloods back negative except have constantly raised GFR indicative of stage 1-2 renal failure, did have dramatic loss of folate lost 3 quarters in a week and was started on folic acid, didn't do much except made my tremours far worse. symptoms have changed so much over the last year deffo better with the plaquneil and when I started on the pred symptoms resolved almost immediately still haven't got that pain in my right shoulder/ neck which hurt like hell and made me pass out, and the crunching when I move my wrists/neck/shoulders whent with the pred to, after a few days on 15 mg started to return but no where near as bad.
fatigue is also better, brain fog still there, funnily short term memory and having to double/triple check things.
my symptoms are/ where-
pain in all joints to the point of passing out.
fatigue both physically and mentally. started as worse 24 hours or so after physical exertion, now constant.
general flue type symptoms
collapsing,
chest pains where I have been admitted and also have very high blood pressure surges,
tremors/twitching, started in my right knee and didn't bother me, then full body, now mainly in legs and hands and worse in certain positions.
headaches, loss of speech, swallow as though my muscles are tired, lost vision in left eye for 10 minutes - they thought I had an sub arachnoid haemorrhage but wasn't.
brain fog
was anxious when I collapsed twice, which I think is a normal response.
get cold hands and feet, hate hot weather as it makes me feel so ill, and getting cold does too
generally feel crap!
so I think I do fit most of the criteria.
definitely think its evolved.
its funny as I try not to let myself get stressed out but can tell when its not working as the tremor is so much worse, funny as I had a piece f paper in my hand and a friend thought I was waving it about on purpose, just the tremor lol.
I was reading this, partly as a health professional myself, and partly as someone with CTD - unclassified at this stage. Day on day I feel rubbish - my elbow playing up (had it drained and injected with steroids 6 weeks ago, but pain back and now in thumbs too). Sorry, Im not digressing to my woes, but merely to empathise as I am putting up with it, managing my own pain (with a major advantage I have the knowledge to do that), but also because I am far too scared to go to the GP yet again. At the same time its been confirmed I have ehlers danlos syndrome (the reason I was originally referred but they were more interested in my fatigue and raynauds), and I don't know if the pain is EDS or CTD. I am really really anxious about my future - but too worried about the GP/consultants reaction who may think I am ahypochondriac if I say. I say nothing to friends for the same reason, and its a hard act to maintain as we all know.
So I guess, like any, we put up with it. I don't post very often on here, but I do read posts with a sense of sadness, anger and frustration. Maybe it is time for charities of 'invisible' conditions to stand together, united, and do some kind of national campaign to health professionals. Clearly there will be some who wont ever take this aspect on board, but there will be many that do. I would have no qualms about standing up at a general medical conference and spouting our story!
My apologies, don't want to monopolise your story, it just made me feel so frustrated for you - and all of us!!
so sorry, but we must all stick together, could you imagine us two and any other nurses at conference, would be a very interesting few hours, I would probably get sacked lol.keep strong get help, keeping it quiet does not help any one u need it sorting out, and employers have to help you. mark.
MAybe, but over the last 8 years I have lost too many friends and am too scared to say anything really now; got so used to peoples eyes rolling. etc that its easier to keep quiet.
A few weeks ago at my church when I was feeling particularly apprehensive, I was told 'you look FAR too well to have Lupus', and I think my final shutters went down, and I very much keep it all to myself since then.
As I said its a two-edged sword, as on the whole I can manage and cope (I teach fatigue mgt as part of my role ) . I have a couple of friends who know, but on the whole keep it to myself. My moments of 'losing it' are v private, and are generally the result of maintaining stoicism!
Not fun with 18 mouth ulcers at the mo, but hey ho.
Maybe a definitive answer may help, but equally no wish to bring that on myself either - but still feel Ive been going nuts; part of that is because 6 years ago I was investigated for MS after I had eye pain, and pins and needles down one side - and fatigue +++. It was negative, but I wonder now whether that was the beginning? Who knows!
Not moaning - no, I am - but desperately despoerately want some answers; I think I still feel like I am going nuts !
know exactly how you feel, I too was investigated for ms but now looks like it was this, whatever this is. I agree getting the diagnosis is the key because you can then get the information leaflets in abundance from lupus uk and hand em out in abundance and say this is what I have, ,so deal with it if there's a problem then its theirs. luckily after run in with the rhumy I can confirm I am deffo not nuts, and neither are you, just a Lupie. take care. mark.
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hope everyone is doing well, Mark
coping with depression from having lupus
2 month wait for hydroxychloroquine
ill health retirement
