wow, first thing I thought was you should change your doctor. The way he/she is looking into giving you a definite diagnosis or their actual thoughts on your having lupus is defiintely not the way to go about things. This is not the way you should be assessed at all, as it is not the 'usual' way to look at a diagnosis/relevant criteria in assessing whether or not you might have lupus. Blood tests alone do not determine a diagnosis in regard to having lupus.
There are questions that have to be asked. Most importantly is about your past medical history. Any symptoms should be looked into and taken into account. It is this history of symptoms that will help determine whether or not you meet the criteria laid down to give a definite diagnsosis of lupus in any of its forms. A reputable rheumatologist would have asked about your medical history, how you feel now and how you have felt for 'X' number of years. Lots more questions should follow and be answered by the patient. It should not be just the outcome of blood test results.
Is this a 'proper' rheumatologist? If not, please try to change to someone who knows what they are talking about, difficult I know to change doctors in the UK but try your best if you can. You need a good understanding rheumatologist who can do appropriate testing and who knows what they need to be asking you.
Sorry If I sound a bit harsh but I am so annoyed that some doctors are dismissive of their patients and just think what they say has got to be accepted. You are the patient and you have the right to ask and ask questions if you are not satisfied with what you are told. It is your body when all said and done.
Hope what I have said reads ok and makes sense. I have edited and re-edited it so many times. I have got a bit of a cotton-woolley type brain at the moment.
Take care. Please pm me if you need to.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 05-16-2009 at 07:18 PM.
Reason: misspelling and jumbly wording - sorry about that
Flahers, hi & welcome. I agree with what GW posted. [HI, GW!] As GW says, lupus is a multi-faceted Dx. The diagnostic criteria used worldwide are listed in a "sticky post" ( = permanent info post) at the top of the thread list, right here. You'll see that generally (not always) you must meet 4 or more of the 11 listed to support a Dx of systemic lupus (SLE). You may meet these over time, not necessarily all at once, which is why a lifetime history is so important. Once you meet a criteria, think of its being checked off permanently, in indelible ink.
FYI, there are also LESSER forms of lupus for which you may meet fewer than 4 criteria. For example, "discoid", abbreviated DLE, may involve mainly skin + fatigue & pain. For "drug-induced", abbreviated DILE, likewise fewer criteria may be met. And there's a form called subacute cutaneous (SCLE) in which some people meet fewer than 4, while others meet more than 4.
In the LESSER forms, ANA & ESR may not ever be positive. And in the bigger systemic form (SLE), while ANA and ESR can certainly play a role, neither defines nor Dx'es lupus---which is probably why GW hopes your dr. casts a much wider net than those two things alone.
Another "carp" about your drs. statement is that ANA may be positive in numerous conditions, not solely lupus. And sometimes it's mildly positive due to solely age, a passing virus, a family tendency, etc.
What problems & symptoms led your dr. to bring up ANA & ESR? Can you spot any of them in the "stickies"? And does anything else ring any bells? I hope after you read those "stickies" that you'll post more. Meanwhile, best wishes, from Vee
Thanks for both replies. Firstly I suppose I didn't give any background info in my message. I have been feeling totally depleted for 1 1/2 years, have had bloods taken twice, all good. Saw a Neurologist two weeks, waiting for results of MRI, which I should receive tomorrow. It was my GP who seemed iffy about Lupus but I will ask for a referral to Rheumatologist soon, if MRI ok. If all ok might be menopausal related.
hi flashers - hang in there ... things are tough but you have already taken control as you are asking questions ...
read the sticky posts re: criteria for lupus.
doctors can be really difficult to deal with at times but i have found that my GP is my 'central point' he is the one i trust and seek advice when i need to change doctors and when to see whom etc. a rheumie is the best doctor to dx lupus ... i hope you find a great one! sometimes we wait to get in to see them so may i suggest 'gathering your data' ... jotting down symptoms, major illnesses, questions, medical history is important. but then a good doctor will guide you thru and get the right info ... blood work is only 1 of 11 criteria used to dx lupus so it also makes me 'angry' when doctors are so dismissive (recently fired my rheumie of 6 years)
What is ESR? And is brain fog, fatigue, a required nap in the afternoon, positive ANA,
Rheumatoid Arthritis, peripheral neuropathy, preference of evening time for chores
and activities an indication of lupus? Any thoughts? Feel free to chime in.