Hello everyone, I just recently went back to my GP for blood work up results. Blood work came back ok. With that news I got upset, began tearing. I asked her what is reason for swollen glands and needed to have one removed, rashes, joint swelling & exhaustion. She knows I have been fighting this for over a year now. Doc informed me that she feels something definitely is going on and that she is going to help me get the answers. She is sending me to a rheumatologist. My appointment is scheduled for Dec. I'm hoping and praying my rheumatology appointment will finally answer why I keep feeling like I do. I have been keeping a daily diary of how I have been feeling since June. I know I should have started long ago. Better late then never, right?
Recent GP appointment : Hello everyone, I just... - LUPUS UK
Glad your GP is sending you to a Rheumy. Brilliant your keeping a symptom diary to take with you and another idea is to take photos of your rashes. It's still hard to wait when Poorly till Dec so if you find it tough ring the clinic and see if you could be considered for a cancellation!. It's worked for me!. Good luck and let us know how you get on.X
Good luck with your Rheumey. We who post here know for sure what you are going through. Keep reading and posting . You are not alone.
Hi Sally79. You are very lucky to have such a supportive GP! Many of us on this forum have gone through similar experiences, but were not fortunate enough to have doctors who believed something was actually wrong with us. Hopefully your rheumatologist is as understanding and thorough. I don't know what blood tests you have had, but some people with lupus are 'sero negative', meaning your blood work does not show increased ANA or other autoantibodies despite having symptoms. I agree with Misty14, take pictures of your rashes, and also any noticeable joint swelling. You are already taking the right steps by being persistant and documenting your symptoms, I hope you find some answers soon.
Thank you Bebe76! I have seen this same Rheumy 2 years ago, I hope and pray she will take everything into consideration when making a diagnosis. If I understand you correctly, a person can be diagnosed with Lupus even though blood tests come back negative? Reason for the diagnosis is do to having the other symptoms associated with the disease?
It is my understanding that only a small percent (I have read 3-5%) of people with lupus have a negative ANA test. However they tend to be positive for other antibodies, such as antiphospholipid antibodies, anti-dsDNA, and many go on to become ANA-positve later. So, if you had a negative ANA test, your doctor may be doubtful whether or not you have SLE, and this could make diagnosis difficult, if in fact it is lupus. I think there were several posts on this forum about this topic from patients who were diagosed despite negative ANA, try a search in the top right hand corner. (I would post a link to an internet resource but my sources of information are books: "The Lupus Book" by DJ Wallace and "The Lupus Encyclopedia" by DE Thomas.)
Hi Bebe76, how are you? Your comments have truly been an eye-opener for me. As a newbie, like Sally79, been trying to come to terms with my symptoms and I find along with the many others received very eye-opening! Can you say if the Lupus society sells these books?
Hi denden, I bought these books on Amazon but you may be able to find them at your local book store too. If you are looking for reliable resources online, try these: lupusuk.org.uk/ lupus.org/. This web site explains various tests for diagnosis: londonlupuscentre.co.uk/lup...
Hi Sally. I am proof that a person can have a diagnosis of lupus without antibodies. I have had fluctuating fatigue, pain & swelling in fingers and knees plus malar rash for approx 25 yrs. I lived with it for about 13 yrs before seeing a rheumatologist. Presentation was classic SLE, in fact so textbook that she wanted to use my photos for training med students but not one single antibody for anything! Disease progression and change mean that we now call it UCTD but treatment is the same. Hope this helps & good luck.
Hi Sally ....hope your rheumy is good too. My rheumy did blood work, ANA negative...said I was healthy despite my joint, tissue, and other issues. My blood work showed positive ANA 5 months earlier. This lupus is very hard to understand. Good luck..
Hello Natura...Did you get diagnosed finally?
I was told I do not have lupus by the rheumy because it didn't show up in bloodwork. When I began to explain what about my dizziness, brain fog, joint pain, headaches I never use to have, kidney scarring, trouble breathing, etc...he dismissed them by saying, oh come on you are not sick. I still look at comments on this site because I believe He is wrong. I have a lot of the same symptoms whether they are not as severe, they are there. I am taking care of myself because the medical profession is off. I will go back once a year to check my bloodwork to see if it has changed. I am also slightly hypothyroid with nodules according to endrocrinologist, but again, rheumy said no hashimotos (my sister has) because it didn't show up in blood work. Thanks for asking.
A chat with the rheumy is a good start. If your rashes are bad, ask the rheumy to bring along a dermatologist too. I've been seeing both (and other 'ologists) over the past two years. But as Natura says, lupus - if it is lupus - is difficult to understand.
My blood tests often come back suggesting things are okay. Even when I've ended up in A&E, been admitted, when visibly I'm clearly not well. I've had skin biopsies too that have shown nothing apparently wrong, even when I've looked horrific. I've had a lot of 'ologists shrugging their shoulders at me looking bewildered, saying I'm am interesting case etc.
Keeping a diary and photo records is a great idea. I do both, if only for work's sake to keep track of when I've had appointments, what medication I'm on, and as a record of my symptoms, severity and generally how I'm feeling.
Thank you for you reply.. I went to a dermatologist about 7 months ago regarding this rash he had no clue why the rash. I had even told him about my swollen lymph node and the other symptoms I was having. Very frustrating...
Hi Sally 79, how are you feeling today? Please know that you are not alone in this. I too am also trying to find answers for the symptoms I'm experiencing. There is one question that I would like to be answered. What exactly is ANA? What kind of questions should be asked about one's blood test results etc?