Feeling discouraged today. Finally saw my rheumy after having that positive Lupus Anticoagulant pop up a month or so ago after two years of clear labs. Of course, three weeks later after completing a full screen for various autoimmune disorders, everything has come back normal again except a "slight positive" on anti phospholipids.
I don't want to seem ungrateful for normal labs; I just hate that I keep having "slightly positive" labs (so far three over the past two years ... ANA, Anti-dsdna, LA and now AP) as well as extreme fatigue and muscle/joint pain but the rheumy says nothing points to anything he can diagnose and that I should just go "live my life" until something else happens.
I don't want a LUPUS diagnosis, but I would also be relived to have an answer as to why these random positive labs occur.
Have they checked the points on your body for Fibromyalgia? It is possible for Lupus test to show false negitive. I got a second opinion when I was first diagnosed. Both came back positive. My mom was diagnosed with Lupys when I was young but years later they said it wasn’t Lupus, but the Fibro. Like 20 percent of Lupus patients have Fibromyalgia too. I have both. I sure hope they can give you some type of definitive answers soon.
Sorry to hear how your feeling but "Destiny Scott" as given you some good sound advice also.
If you are Lupus related and blood keep showing different it's because Lupus gives off false readings through fluctuating our blood and regarding the result on the anti phospholipids what did the rheumo say about that, as it can be antiphospholipid syndrome where the blood clots as i have it and take baby asprin daily.
The link below about the blood tests may help you alot more.
I know it's upsetting to have all these symptoms but yet labs that aren't conclusive. I went to several Dr's with the same problem. The labs weren't conclusive until I came down with Lupus Nephritis then the labs became very positive. Keep seeing your Rheumatologic periodically. Hopefully, you won't develop Lupus. You may have Fibromyalgia. Autoimmune diseases mimic many other diseases, viruses etc. If you have a teaching facility near you it might be helpful to go to the Rheumatology Clinic for a work up if your symptoms persist. I hope you get an answer soon
I have never had a postitive ANA. But, rest assured I most certainly do have lupus. It took a kidney biopsy to find and my Rhuemy said that as my protein output lessens I may show a positive ANA. Blood tests are not the only determining if you do or do not have lupus. If your doctor is not willing to look further than your blood tests, perhaps it's time to find another doc.
Thanks to all of you!!! This is definitely a place of encouragement and I appreciate your comments and suggestions. I have been diagnosed with fibro (forgot to mention that) and was in a good place just living into that and creating a fairly good life for myself with the help of Savella for the aches and pains. However, it is these random "slightly positive" labs that throw me. Why are they showing up and why does my rheumy disregard them because they are only "slightly positive"? Isn't a positive a positive? Strange way of practicing medicine and unnerving. I think I will take DeAnne's advice and get a second opinion if another one pops up at some point. For now, I will be grateful for normal labs again and grateful for this forum!! Terri, I will check out that link as well! Thanks again - my heart is a little lighter just hearing from you all today.
Go for a second opinion as some rheumo's just try fobbing you off and like "DeAnne" said Lupus can be proved through other ways like biopsies...she's given you great advice.
You do need to know though if you have antiphospholipid syndrome known as Hughes syndrome for short because if so they should put you on Asprin to help keep your blood clear.
((Hugs Terri xxx))
Sharon1123 said:
Thanks to all of you!!! This is definitely a place of encouragement and I appreciate your comments and suggestions. I have been diagnosed with fibro (forgot to mention that) and was in a good place just living into that and creating a fairly good life for myself with the help of Savella for the aches and pains. However, it is these random "slightly positive" labs that throw me. Why are they showing up and why does my rheumy disregard them because they are only "slightly positive"? Isn't a positive a positive? Strange way of practicing medicine and unnerving. I think I will take DeAnne's advice and get a second opinion if another one pops up at some point. For now, I will be grateful for normal labs again and grateful for this forum!! Terri, I will check out that link as well! Thanks again - my heart is a little lighter just hearing from you all today.
I love you determination regarding the specialists as you sound like myself and they hate you carrying knowledge of Lupus and other autoimmune diseases to discuss...it makes me mad at times with what i hear members go through, christ we're not born thicko's as they think :)
Christy said:
I've also heard that you can have a positive ANA one time then the next time it could be a false ANA. Knowing me this is probably what will happen to me as well. Like you you never want to be diagnosed with an autoimmune disease but obviously our pain is telling us otherwise. I've learned I have to be pushy with the doctors. I will meet with the rheumatologist not until June 14 but I won't let him brush me aside.
Don't let th e doctors give your pain the back seat, I agree you should keep getting tested. I'm on 500 mg of naproxen morning and night and it only masks the pain.
It took years for me to be diagnosed with SLE lupus, even after I had three positive skin biopsies for tumid lupus! During that time I did live my life with ups and downs but I continued to see the rheumy every three months. I was finally diagnosed even with negative (lupus) blood work. Even if you are diagnosed you will still live your life, so go on and live your life just do it with caution! Educate yourself on the subject matter and take the precautions you need to take! Listen to your body and do what it tells you to do! We know our bodies better then anyone else!
Remember a diagnoses doesn’t define who you are! Lupus or not you are still the same person, you will just have more limitations then most!