Yes, I'm afraid you are right! For most people the diagnostic process in auto-immune diseases can be frustratingly slow. Unfortunately they are complex and many people wait years for diagnosis. I was ill for around 9 years (thankfully including a two year remission period) before I was finally diagnosed. I'm not saying that to put you off but just to say that we do understand and to be prepared and arm yourself with a great deal of patience.
maybe we can help answer some questions and help you prepare yourself for appointments etc. Have you already been to see a rheumatologist? How are you affected by your symptoms?
Thanks. Yes, reading other posts I think I'm actually very fortunate. I had sore joints last summer and when I saw my GP she did blood tests. Because one of them was abnormal she reffed me to rhumatologist straight away, and he is really nice and seems well up on all the possibilities. I've had two appts so far - lost count of the blood tests and x rays, an MRI and am waiting on a bone scan. I know one of the tests was for Lupus though so I've done some reading and it seems to make so much sense of the last few years - even the 20 years of atypical migraines i've had -I almost ant th est to be positive. Not coz I want Lupus or anything else, but so I can make sense of things - even my mental ill health fits.
Whatever it is affects me differently from day to day. Sometimes my hips are so sore it hurts to walk, other times i'm pretty much ok. I have a rash on my legs and arms all the time, and low white cell count and high ESR.
My next appt won't be till july at the soonest, and could be later if I've not had the bone scan by then. I would just like to know either way. Am I right in thinking if the test is negative I definately don't have Lupus or can it be inconclusive?
Welcome to the forum !
I'm glad you are happy with your rheumatologist and hope you won't have to wait too long to get some answers, be validated and get helpful treatment.
I don't think there are any tests that can show conclusively that you don't have lupus. There are very few that show that you do have lupus and not everybody with lupus is affected these ways - 2 antibodies and skin and liver biopsies. Diagnosis is done by careful and experienced consideration of all the elements, signs, symptoms, health history and lab tests of various sorts.
You might find it useful to make a note or get copies of exactly what tests are being done and the results. It helps understand the disease process, how the disease is affecting you, enables dialogue with your doctors and to check that all the right sort of tests have been done.
Hello, Welcome here, ask anything you want. All the Members here will do their best for you. I have had Lupus a very long time, so does my Daughter but you can always learn something here and the people are great.
:hehe: :sad: i had been ill for about 5 years and my old gp said i was just streesed, god i hate that word,but finaly my new gp was a lot better and got me to se a specialist who told me i have lupus(was i glad or wot?) at least i knew wot was wrong .still coming to terms with it but getting there. the meds are going to help they tell me a pity they cant help my spelling. ha ha