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Discussion Starter · #1 ·
Dear All

I'd appreciate your help with a few aspects of this lupus workshop I'm holding which is focused on the GP's role in lupus.

The first list is of two things, misdiagnoses which touches on differential diagnosis with all that can imply, and the second, missed diagnoses meaning failure to recognise diseases or conditions along with the lupus either caused by it or distinct but not identified ( eg B12 deficiency, celiac, thyroid )

Naturally there aren't many diagnosed people here who turned out not to have lupus at all :lol: but any thoughts about such diseases are welcome too.

Please say if you can how long your mis- or missed diagnoses lasted or took.

Many thanks :)

Clare
 

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Dear Clare, my misdiagnosis lasted about twenty years during which time several ludicrous diagnoses were suggested.

Some of this was quite distressing so if you feel I can help you at all I will PM you any further details.


x Lola
 

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The two main misdiagnoses off the top of my head were shingles (rash, fever, pain were the primary symptoms - shingles virus not present in bloods or swabs though) and depression (primary symptoms were lethargy, fatigue, confusion, ADs did help me a little though).
 

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Discussion Starter · #4 ·
Thank you (((( Lola)))) Yes please I would be glad to hear from you. It is distressing just thinking about so much suffering for so long, not to mention going without correct treatment and being treated wrongly while the lupus gallops on its havoc wreaking way.

Perhaps you could indicate any particular circumstances that made diagnosis harder, such as no positive blood work

Many thanks and many hugs
Clare
 

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Discussion Starter · #5 ·
Thank you alimonkey and also for the similar thread you started last month ! :) Do you ever find out what the shingles actually were? Urticarial vasculitis, bullous/ blistering lupus skin, perhaps ? I hope you are doing well enough
Hugs
Clare
 

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No I've not really had any specific diagnoses for the skin issues - I have a big lesion on my arm at the moment that's been there for nearly a month - the nurse looked at it when I went for bloods this morning. Very strange - the only way I can describe them is like hard hives! Might have to have a skin biopsy sometime. I see rheumy next month so I'll raise it then.
 

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Oh I forgot about my 'asthma'. I have a ventolin inhaler. I was never formally given a diagnosis, but then out of the blue got a letter from my GP inviting me to asthma clinic. Not convinced I do have it, but I do have a shortness of breath and chest pain with deep breaths. I've had the inhaler about 4 years. Not much came back on my allergy screen, although I have had asthma type attacks.
 

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The first diagnosis considered for me was lyme disease. When that came back negative I hit the "well I don't know what it is, therefore you must be making it up" attitude (depression was hinted at too - I wasn't remotely depressed). This became more unforgivable as my symptoms became more visible (ie swelling, blindingly obvious malar rash, blood results going a bit mad). I only got past the gp when I was so ill I was admitted to hospital - the consultant was baffled as to why I hadn't been referred far earlier. All in all it took about a year - I think I was one of the lucky ones!

I don't mind GP's admitting they don't know what the problem is, after all they're human and obviously don't know everything. My issue is that they should then refer you onto someone who has a chance of figuring it out, not leave you suffering.

:hehe:

ETA - It left me with a profound mistrust of GP's, which is a shame because logically I know they're not all egotistical morons...
 

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Hi Clare

Like many, I seem to have spent much of my life having my symptoms missed/ mis-diagnosed. I won't go through them all - less you ask me to - but I outline some below.

When I was four (in 1959) , I was diagnosed with a "rheumatic fever type" illness. In my twenties (in the early 1980's) I was thought to have Hodgkin's lymphoma - which, after a biopsy, changed to possible Cat Scratch Fever?!?! Finally, and apparently defeated, I was asked whether I wanted to be referred to a psychiatrist?!?!?!

I was under a psychiatrist for 10 years, diagnosed with severe depression and, possibly, bipolar disorder - as my energy levels constantly fluctuated. Once a neurologist was persuaded to do a brain MRI following muscle wasting, I was diagnosed with MS - due to a "MS distribution" of white matter lesions -Lupus was ruled out by the neurologist on the basis that I was ANA negative and didn't have a butterfly rash.

As the diagnosis didn't ring true to me, I went to see an endocrinologist who referred me to a rheumatologist (specializing in lupus). This led rapidly to a diagnosis of lupus with possible Hughes (albeit with negative ANA). The time between the two diagnoses was 10 months.

Having a wrong diagnosis can be quite devastating. There is undoubtedly a stigma associated with mental conditions such as depression and bipolar disorder - and this has an effect not just on the patient, but also on all doctors that deal with that patient. Where the misdiagnosis is of a condition that is likely to lead to serious incapacity and worse the effect on the patient and their family and friends can be devastating. Issues also arise for the patient's children where the misdiagnosed condition has a genetic component and may impact them directly.

As strange as it might seem - I was still happy to have the lesions discovered and some form of diagnosis. Once I had the MS diagnosis other medics started to take my condition seriously. Suddenly, I was no longer a hypochondriac, but someone to look at more carefully. Doctors now looked at my old blood test results and suddenly discovered unacceptably high CK levels, below normal white cell counts, below normal androgens and complements. They had been there all along! They also found a vascular bruit and heard me when I said I have raynauds and was endlessly exhausted.

Thus, without the initial false diagnosis of MS, and my determination to get a correct diagnosis (to ensure the correct disease modify treatment), I'm not sure that I would have found myself with a lupus diagnosis within a year.

Hope this is of interest. Let me know if you need anything else.

Merle
 

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Hi Clare,

Since I joined this site you have been a huge help to me so it is nice to be able to give back something small to you. I won't write the book but instead outline for you my story.

In 1993 I started with panic attacks and was dx with Anxiety Disorder.

1998 I was given the diagnosis of Chronic Fatigue Syndrome.

2001 I graduated to Fibromyalgia.

2005 I had a mini stroke...T.I.A. and received the diagnosis of MS.

2008 my bloods finally started showing abnormalities that gave me a dx of APS with the possibility of Lymes disease and Hepatitis C. Both of these were ruled out by more extensive blood work but by doing this other things started showing up.

In June of 2008 I received a diagnosis of MCTD, began Plaquenil and Steriods to control inflammation and that is where we are today.

I hope this story in a nutshell helps and thanks again for bringing awareness of Lupus to others who I know will learn a lot from you.:wink2:
 

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Missed and Mis diagnoses

Hi Clare,

What a hot topic!

Mine are : Prediabetes/insulin resistance - actually disappeared with immune suppressant treatment.
Irritable Bowel Syndrome - turned out to be Microscopic collitis also tamed with immune suppressants.
Candida - Food Intolerances that didn't show up in blood tests.
And my latest delight, still rankling. Psychosomatic CNS symptoms, in the opinion of an incredibly arrogant psychologist, after a 40 minute consult at the request of my rheumatologist who has diagnosed, and is currently treating me for CNS Lupus with cytoxan and immuran and asked this idiot to review my drug combinations. I told him to pack up his box of spiders and crawl back under whichever rock he came out from. I might add that she has just pulled me off of a drug trial being conducted by a swiss manufacturer (placebo, we think) where I met all the criteria they required for a CNS Lupus diagnosis to qualify for their trial. Where do they find these people? it's not just GPs! They are a disgrace to the hypocratic oath!
 

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I am 70+ and was diagnosed with SLE about 15 yrs. ago. However, now that I know an episode for what it is, I can remember incidents from much earlier times. Immediate triggers for me were birth control pills during child bearing years and hormone therapy when I reached menopause. Also, sun exposure and stress. I finally had to leave a stressful marriage. A casual acquaintance (a nurse) suspected I had lupus from the butterfly rash, fatigue and joint pain and gave me the name of a rheumy who quickly put a name to it. Apparantly I have a high tolerance level for pain and only took my complaints to doctors when random joint pain made movement difficult. When x-rays and scans didn't turn up the problem I was frequently just chalked up as a bored hypochondriac.

I cope with lupus by living a simple, uncomplicated and mostly solitary life. That plus proper meds and an understanding doctor make life worth living for me. Few of my friends or family members truly understand lupus but they accept me and my chosen lifestyle.
 

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Hi Clare,

I think you know my story - a pretty typical one - trouble for years with docs saying that I was overworked or stressed (and even implications of depression). My problem, total absence of anything in "routine" bloods. No positive ANA. I had had positives before (not ANA), things like CPK, RF (at that time lab levels were higher so my RF of 50 was considered insignificant as 40 was acceptable - that's gone down to 10 now) and then I started getting tiny signs of inflammation but in the words of the rheumy "if you had polymyositis (or lupus) it would be MUCH higher" - well the inflammtion can run riot and it never is. My joints also hardly ever swell they just get "hot" to touch.

Thankfully for me (a person with little skin involvement) I finally presented with a clear malar rash. I didn't think anything of it then spoke to mum and she said go to your GP - it had gone down by then but he still took a photo and said it confirmed for him what he thought. The rheumy, in desperation (as she was about to treat me for fibro even though we both knew I didn't have it), sent me to a dermy (as I had dry eyes and she wanted a sjorgens biopsy). The dermy, fresh faced and just out of school, took one look at my photo and said "I'm going to do a skin biopsy for lupus"... and to everyone's amazement it came back a strong positive (and that was on unaffected, unexposed skin). Since then, due to symptoms I have had polymyositis added to the mix and, due to bloods, APS.

Not sure that's very helpful but I think I am very lucky to have a young yet old fashioned GP, he doesn't rely entirely on bloods, he takes a lot of time with his patients, respects their opinion if they say that they think he's wrong...

Katharine
 

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Hi Clare

I don't have much to tell you in the way of mis-diagnosis - I was diagnosed fairly quickly as my SLE went severely out of control very fast -all within the space of about 5 months.

Initially, when I presented with a malar rash, my GP treated me for rosacea. Crucially though, when I didn't respond to treatment, he admitted he wasn't really sure what it was and referred me on to dermatologist. The dermatologist took one look at me and said 'Oh you have lupus'. I was diagnosed with DLE following a skin biopsy.

In reality, it was SLE all along and when I went back to my GP with drastic weight loss, fevers, fatigue etc. he initially thought it was glandular fever and treated me as such. When I didn't respond, and in fact, worsened, I was admitted to hospital for a little over a fortnight. There I was diagnosed with SLE.

I wanted to reply to you because I really think my GP (at the time) was fantastic. He discussed treatment options with me, acknowledged his lack of expertise and (crucially) made appropriate referrals. He didn't dismiss anything that I said to him.

When I was very sick he made me ring him every morning to check on my improvement (there wasn't any though!). I was in college at the time and when I went home (to my mammy!) he rang me and asked for my GP at home to call him. They both liaised on further treatment then. He also rang me while I was in hospital to check on my progress.

I've now finally finished college, so I don't attend that GP anymore, but he was a blessing to me. I read some of the stories on the forum and I'm so shocked and saddened by how people are treated by their GPs. Mine made my diagnosis so much easier for me and I'm thankful for that.

Best of luck Clare!

Take care,

Nellie
 

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I was actually pretty quickly diagnosed by my GP once I started complaining at least...

There were "hints" in my past medical history though that are clues a clever GP will consider:

Age 20: a bone dry Schirmer's test
All through my 20's occasional brief bouts with pleuritis *not* following an Upper respiratory infection
Age 29: cubital tunnel syndrome both arms relieved by surgery
Age 32: red facial rash initially misdiagnosed as rosacea

Months later with rosacea treatment ineffective I got truly sick with a swollen toe, followed by severe joint pain, incredible fatigue and low grade fever lasting a few weeks when my GP tested me for ANA (as well as mono, parvovirus infection, etc.). I was quickly diagnosed after that.

My GP asked me all sorts of relevant questions that had never been asked of me before which led her to my diagnosis including (1) did I have mouth ulcers and (2) did I get a rash from the sun. I had for a few years prior been troubled by these things but never mentioned them to a doctor.

So my only really wrong diagnosis was rosacea but really overall I feel she did a good job.

However... treatment after my diagnosis was not always handled well but that is another story for another time I guess!
 

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Hi Clare,

I was diagnosed quickly too. Although I think if I hadn't mentioned my brother had SLE at the last minute. I think I would of been diagnosed with RA as that test came back high. But the blood tests were screaming lupus so there was no doubt that it was SLE. He said that my RA test was a false positive.

So thank you brother for having SLE before me.:p We do like to share everything.:hehe:

Love,
Lyn
 

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Initial thoughts were MS. They were so convinced they just waited for lesions to appear. Next was Lyme's since we had been out on the river during the summer. Then I tested positive for Gullainm Barre. Tested for ALS. Revisited MS. Exhaustion was chalked up to recent pregnancy. Next was RA, thanks to a lab tech doing an ANA on his own I was told possibly Lupus. After doing more tests told no Lupus since there was no kidney involvement, visibly swollen joints or raised ESR.

15 years later I requested to see a rheumy. I was diagnosed immediately. GP's had not connected all the symtpoms: thyroid problems, raynauds, mouth sores, a light mylar rash (not raised), hair loss, photosensitivity, telangiectasias, fever, weight loss, numbness and repeated chondritis that went along with the joint pain.

How much time are you being given to speak? You sure won't have a problem filling the time.

Take care,
Lazylegs
 

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I was also diagnosed relatively quickly, but I was definitely diagnosed with Henoch-Schonlein's Purpura before the lupus diagnosis - at that point I had pinpoint purpura all over my legs, joint pain and fatigue. I think I also had some inflammation in my Achilles tendon, but it was chalked up to a ballet injury - that was investigated for a potential clot, but the ultrasound was negative. The H-S purpura diagnosis lasted about a a month I think.

It seemed reasonable at the time, it wasn't until I started showing additional symptoms (extreme fatigue, additional rashes, mouth ulcers, quite swollen joints) that they started adding things up. They stopped talking about H-S Purpura, and went back to "undiagnosed" for a couple of months, before a malar rash and a positive skin biopsy confirmed SLE to everyone's satisfaction (except mine!)

My dad is a GP (never let family members diagnose you!) and he thought initially that I was depressed, since my major early symptom was fatigue. Reasonable I suppose, but it still stings. I think he stopped thinking that it was "just" or "only" depression within a couple of months, when I had undeniable physical symptoms too.

Docs are only human, it's good to remember that, and I don't know if there actually IS a textbook presentation for SLE...
 

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I think Maia's point about GPs asking relevant questions is very important. I was never asked those questions (though my GP is uually very good on asking questions), whether by the GP or the rheumy and so only the things I complained about were considered and dots were missing.

For example, It never occurred to me to mention I was highly photosensitive as I had been since about age 18 and for me it was just like that and an inconvenience not a symptom. I also never mentioned regular mouth ulcers and swollen lymph nodes. I had no idea had mild raynauds until, by freak chance a cardiologist once told me that (as if I already knew) during an appointment. Severe and massive chilblains I had had for years (when I used to work outside) were also completely forgotten by the time I got to the doc...

Katharine
 

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Katharine;558242 said:
I think Maia's point about GPs asking relevant questions is very important.
I have never come across a GP who had any interest in diagnosing anything other than the immediate problem - whether it be asthma, chronic bronchitis, repeated pleurisy, acne, IBS, premenstrual tension, polycystic ovaries, early menopause (4 years before conceiving normally and without trouble!), pre-eclampsia, failing placenta, blood clot on lung, depression, anemia, lumbago, slipped discs, scoliosis .......... Got to the point I was embarrassed when they had to wheel in my notes! :)

This is not so much a criticism of their abilities, as of their need (personal and professional) to get the patient sorted and out of their office. The primary significance of this is that it is the GP who determines the type and the specialty of consultant to whom a patient is sent.

In my experience, what you get from a consultant is a diagnosis specific to his speciality. Thus, when sent to a psychiatrist, my fatigue was diagnosed as depression and when sent to neurologists, I got various neurological diagnoses such as MS, ADEM etc..

It seems to me that it will only be possible for patients to gain a reasonably early diagnosis of lupus, if GPs start to give them (particularly female patients) the benefit of the doubt when presenting with malaise type complaints. They also need to take the time to review patients files to find the patterns: - it could save them a lot of time in the end. ;)

Merle
 
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