I know how hard it is to deal with all these test neg this and pos that it goes on and on. you can have Lupus and have neg bloodwork for many many years I did it took 18 years for mine to show up in my blood. Finding a good Doctor that knows about Lupus is what you need. Take Care try to stay calm.
GoodDog: Thanks for uplifting me. I would prefer to see a woman doctor but I'm already having a hard enough time just finding a doctor that can figure this out that if I also limit my options to females only I'm afraid I'll never get answers. I just need to pull up my big girl panties and get tougher. Perhaps I need to just take a break for awhile from doctors and searching and researching. I say that now until WHAM I get hit again with all the assorted symptoms and then I will be back to feeling desperate for answers. SIGH....I just don't know. I think taking a 'little' break is much needed for my mental health. We will see.
Michelefish: Are you saying that it's still possible to have Lupus even though my ANA was positive but the compliment work up for lupus was negative? REALLY? I just don't understand why this doctor wouldn't share something like that with me. I know doctors are human and not super gods with powers to cure all that ails us but COME ON! If it walks like a duck and quacks like a duck perhaps it should be treated like a duck.
This doctor started talking fibromyalgia and I can tell you I DO NOT HAVE that! He urged me to start taking Cymbalta in hopes that it will block the worst of my joint pain and flank pain. I've only been on it two days and I can tell you it makes me SO nauseous. Plus I still feel pain. I'm going to take it maybe two weeks and if it doesn't help I'm going to stop. I'm just desperate for relief.
Yes it is true and the first time I got to feeling bad I was told that I had fibro too. I think that it is what doctors say when they don't know.My sister has Lupus with neg blood results one day they will b e positive. She has lost most of her hair on top and runs fevers all the time sick to her stomach and pain in her muscles even tho her blood work is neg they told her Lupus.
Hi Kimmi. Michele is correct however most doctors don't tell you that because they don't understand this disease either. There are two things that I want to share:'
1. Lupus is diagnosed using cumulative symptoms. This simply means that you don't have to have all the symptoms at the same time. If you have a positive ANA today and it goes away next month you still should be listed as meeting one of the criteria. Next week when you have mouth ulcers you simply add that to the ANA showing that you have met 2 of the criteria.
2. Positive ANA doesn't mean you have Lupus. There are several other reasons for a positive ANA (and there are some people with Lupus that have a negative ANA). Before a symptom can be added as coming from lupus all other reasons for it have to be ruled out. That is why you here people say that Lupus is not diagnosed by symptoms but by exclusion of all other options.
Too many doctors don't understand the way to diagnose Lupus. They want all symptoms to show at the same time but it is rarely that way. They also live and die for the bloodwork and it can be fickle sometimes.
Fingers are crossed for you
Last edited by tgal; 03-21-2011 at 06:20 PM.
Success is not final, failure is not fatal: it is the courage to continue that counts.
Thank you very much for taking the time to explain that to me Mari. This doctor also said I tested negative for Scleroderma. So he ruled that out. He's talking fibromayalgia (Which I know I do not have) and trying me on Cymbalta (which is making me sick to my stomach) and if that doesn't work he said he could send me to a Neurologist and that perhaps this is nerve related.
So HOW, pray tell, do I find a doctor that knows Lupus and how to diagnose/treat it/rule it out for sure?
You know, I'm sure there are MANY of you here that must be able to understand when I say, I don't want some terrible disease but I do want to know what I have so I can get treated and hopefully feel better and get my life back (well at least a better quality of life then what I have now feeling so badly).
Thanks all for your help, insight and advice.
Crossing my fingers. My neighbors mom has Lupus and I decided to stop by her house tonight after work and find out who her doctor was that diagnosed her. Come to find out when she first started down this road she only had a positive ANA and nothing else in her blood work. This guy dug and also based on her symptoms diagnosed her. I check him out on my insurance web site and he is an accepted provider. She said he is also involved in Lupus studies. So surely he knows Lupus and will be able to either confirm or deny for me if that is what I have going on. It was amazing that she and I had many symptoms in common. I sure hope I'm on the right road this time.
Oh kimmi, that's terrific news!!! Amazing what we have to go through just to find someone that knows how to do their job! Let's hope he can see you soon.
hope you can get to see the doctor soon.
sound like you might be on a winner with him.
kimmi... i literally had to nearly die before they took me seriously... mind you it was over 10 years ago I searched for a diagnosis. My doctors always preferred to think I had a urinary tract infection causing the protein in the urine, an ear infection causing my dizziness, anaemia caused by not eating right, lack of concentration rather than brain fog, psoriasis was my facial rash and carpal tunel causing my joint pain... all at the same time for no reason. It wasnt until I had my baby and a pulmonary embolism with tumour and haemorrhaging that they looked into what was causing everything.
Originally Posted by kimmi
It's alright the doctor's saying you have'nt got this and that, when they know themselves that Lupus if you do have that in your blood plus your ANA was positive does make your bloods fluctuate bad and give wrong reading's off at different times.