working in health care i cant understand why so much importance is placed on a test that proves nothing, causes undue stress to some because some doctors refuse to diagnose without a positive result and fluctuates anyway.
if you have a broken leg, you have a broken leg simple if you have diabetes and your blood sugar is normal range you still have diabetes.
this issue of doctors not labeling people is wrong, especially when you meet all the accepted criteria for diagnosis, i would argue to have a diagnosis is better than to just be left in limbo.
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scoobydoo1
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Its bloody frustrating. I was told had lupus , went to St Thomas and they said have tested positive twice for the lupus inhibitor. I have got Hughes have confirmed I had blot clot in arm. I've loads of symptoms going on but St Thomas say not lupus. I've had more tests and they are doing ultrasound on shoulder of the arm that had blood clot. I do wonder if I have fibromarlyia as have joint pain stiff nest, my bones seem to crack and seems to fit in.
I bet it must be harder when you work in the health sector and still you are feeling the brush off. You hope that one day you meet that doctor who does care. Seems to me with other views on here that most rheumatologiststhink your wasting there time.
Because otherwise they'll just have to rely on a patient's assessment of his/her symptoms, which are subjective. The preference is to get to a diagnosis by corroborated evidence - i.e. patient's assessment and blood tests. The ANA is more often than not an indicator of autoimmune disease, so they'll go for 'more often' - if it's present and you have got symptoms, likely that you've got autoimmune disease but many doctors would like to see other blood test results being out of range if they are to diagnose.
I'm not sure why the reluctance to diagnose autoimmune disease - it may be due to the high cost of monitoring a patient with a chronic disease but it may simply be that they wouldn't want to put a patient on medication if they are not sure that the medication helps. The first rule of being a doctor is 'do no harm'...
I hope I am wrong but with all the strain on health budgets these days, it may be that some doctors are taking on the role of proxy accountants. Re the high costs of monitoring a patient.
Multi-skilling is useful in difficult times. Some may readily opt for it and others may feel pressured to follow the same lead.
I just had a postive ana test.. but my indecisive consultant wont decide!! original diagnosis was inflammatory arthritis and fibromyalgia.. dont know were I AM NOW!! was on course for anti tnf.. now rug pulled and full stop on treatment and any diagnosis!!. only have pain killers!! lots of use of steroid use has given me high blodd pressure!
Hehe, totally understand but I agree with purpletop. My positive ANA 1:160 got me refered from neurologists looking for MS to a rheumatologist when I was living in Turkey. But, I was told by a neurologist here after my return that in the UK they probably wouldn't even bother with someone with such a low titre and that he felt I didn't have lupus or MS but should consider depression. Finally sent to Dr D'Cruz at Tommies who after looking through my notes, a physical and a chat gave the definitive - you have lupus and possible Hughes. Turns out I have Lupus anti coagulant. I told my current Tommies consultant that is good I have lupus antico as my other bloods are usually normal and he said, get this, ah but you can have lupus anticoagulant without having lupus! How crazy is that... Confused? you will be on the next episode of lupus the undiagnosable disease. Lol xx
I meant its good in a way I have lupus anticoagulant as a proof I have lupus
I now totally understand this frustration. I also work as a health professional and am finding the whole process a tadge bizarre. Illnesses aren't always textbook. I'd incorrectly diagnose and treat most of my patients if I stuck to text book lists! Surely fluctuating symptoms, signs and test results are an indication of a fluctuating illness?
for me its frustrating as I have most of the symptom indicators and also family history of auto immune conditions, and still im fighting for a diagnosis. I have had good improvement with hydroxy and also short course of pred and still no diagnosis, just the opposite.
Have you asked your doctor why no diagnosis of lupus, given that the odds are stacked for it being the culprit? Sometimes it is a matter of turning the question on its head, get him to think of "why NOT lupus" rather than "why lupus". Tell him that it seems to you that there are more arguments for lupus than against and he needs to explain to you his reasoning because ultimately you have to live with the lack of diagnosis and treatment.
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London lupus centre
Does anyone else get joint/muscle pain more in one side of the body or one particular joint or limb?
