I HAD A POSITIVE ANA (1:160) AND ELEVATED SED RATE A COUPLE OF MONTHS AGO, WITH LOW GRADE FEVER, JOINT PAIN, FATIGUE. I SAW A RHEUMATOLOGIST WHO DID MORE BLOOD WORK AND MY ANA IS NOW NEGATIVE (THE TEST READ <=1:40). I AM STILL HAVING THE SAME SYMPTOMS. CAN THE ANA CHANGE IN LUPUS OR OTHER AUTOIMMUNE DISEASES. HAS ANYONE ELSE EVER HAD THIS HAPPEN? SINCE EVERYTHING IS NEGATIVE, SHOULD I JUST LET IT GO AND ASSUME I DON'T HAVE ANYTHING?
That happens sometimes in the beginning... I was positive then negative and then positive over a number of months. It can be EXTREMELY frustrating. Sometimes it's important for the doctor to look at the big picture, including the rest of the symptoms you are experiencing. (I always made a list of what I was going thru - including as much detail as possible)
Some people never test positive and have the disease while others test positive and don't have it. Sometimes other things can cause an increase in ANA's too - like Mono. You can go to lupus.org - click on brochures - they have a .pdf file on tests for lupus and a lot of helpful info that might shed some light for you.
I went through a number of Rheumys before I found one that I liked and seemed to listen to me (unfortunately, he's no longer on my insurance).
Where did the Rheumy leave things? Does he/she want you to follow up in a couple of months or what?
Just as a side note - rainbows and bunny rabbits don't hop out when you get the diagnosis - I was expecting the angels to sing and stuff. Sometimes I think they make the entire process of getting the diagnosis so hard to break us in for what's ahead. Lupus is a journey - and it's not a path most of us would have chosen for ourselves. There are drugs to treat your symptoms and try to manage the disease, but there are no magic pills.
Good luck and keep us posted and keep your chin up.
THANKS FOR RESPONDING. HE PUT ME ON PROVIGIL FOR THE FATIGUE AND TOLD ME TO KEEP TAKING THE IBUPROFEN SINCE IT HELPS. I HAVE TO SEE HIM IN 4 MONTHS. IT REALLY IS FRUSTRATING BECAUSE THERE IS NO WAY I FEEL THIS ROTTEN AND BE PERFECTLY FINE UNLESS IT IS ALL IN MY HEAD WHICH I THINK SOME HAVE COME TO THAT CONCLUSION AND NOW I DON'T EVEN WANT TO TELL ANYONE WHEM I DO FEEL BAD. ONCE AGAIN, THANKS FOR RESPONDING.
Was this a rheumatologist that put you on the new med? How long have you been on it? How long did they say before you should notice some results?
If it's not working - and it's had time to "kick in", I would call back, ask to speak to one of the nurses -explain what's going on and tell them it's not working and you can't function. Sometimes it means jumping up and down and screaming - literally - to get them to understand what you're going through. Although the actual jumping up and down can lead to being locked in a padded cell sometimes (kidding!)
Hi,Well you are not alone in this great mystery,after having many symptoms for many years I am not diagnosed with any condition.Not that I want to be but it would just make life so much easier to know just what this battle is all about.
I also have the variable ANA results and have been told that it is not specific to Lupus,it can occur with many auto-immune conditions including MCTD which is where I am currently at with diagnosis.My Doc has ordered more specific tests,some which will rule out other conditions,so the waiting and whining game continues.But hey this old body is going through something so my whines are justified.
I think we all know our own bodies best so if yours is telling you something is wrong then it is.And like scbagrrl said keeping track of how you are feeling is important(I am just learning that one)so many things a person tends to ignore or think not related may be another clue.
Well Good Luck to You and keep reading and learning as much as you can.
I AM GOING TO START KEEPING A "JOURNAL" OF WHAT I AM EXPERIENCING, LIKE THE FEVER, JOINT PAIN, HOW BAD THE FATIGUE IS. I HAVE BEEN ON THE PROVIGIL FOR A WEEK AND I DO SEEM TO HAVE MORE ENERGY BUT I AM STILL TAKING THE IBUPROFEN FOR THE JOINT PAIN. MY BIGGEST WORRY IS THAT NOW THAT ALL THE BLOOD WORK WAS FINE ON THIS LAST VISIT, THAT THE DOC WILL THINK I AM JUST OVERREACTING ABOUT THINGS. I AM FEELING BETTER NOW THAN I DID 3 MONTHS AGO. I WORRY THAT I DO HAVE SOMETHING GOING ON, NO, I KNOW I DO, AND THAT IT WILL KEEP PROGRESSING AND GETTING WORSE. I DON'T REALLY KNOW WHERE TO GO FROM HERE NOW. THANKS FOR ALL YOU ADVICE, I AM GOING TO TAKE IT!!
I know it sounds impossible, but stress is the worse thing possible for you right now. You have to balance it between being aggressive for your treatment and realizing that there are some things out of your control...
I'm glad you're feeling better. I'd give the medicine a month at least. If you start having more significant problems, then give your doctor a call. I HOPE that it's not autoimmune problems. It's not something that you want to be saddled with. I know you really want a diagnosis, but it would be a blessing if it was something that passed.
Are you getting any exercise? Tai Chi is a great choice for those of us with joint pain - it's gentle and relieves stress. You can check with local churches/YMCAs to see if they offer courses. I'm afraid you're going to self-destruct from the stress you're putting on yourself!
YOU ARE SO RIGHT. I HAVE A FRIEND WHO IS TAKING TAICHI AND I AM THINKING OF GIVING IT A TRY. I KNOW THAT STRESS AND WORRY IS THE ABSOLUTE WORST THING FOR ME. I JUST DON'T WANT THE DOCTOR TO SAY OK, YOU DON'T HAVE THIS AND THIS AND THEN NOT TRY TO FIND OUT WHAT I DO HAVE IF IT ISN'T IMMUNE RELATED. I AM GOING TO FOCUS ON EATING BETTER AND ADDING EXERCISE. THE WORRY, WELL, I'LL TRY TO WORK ON THAT LITTLE BY LITTLE. THANKS FOR HEARING ALL MY VENTING. I THINK THIS MAY BE THE FIRST STEP TO CONTROLLING MY FEARS.
I went through four or five doctors that said it was depression, stress, hypochondria, crohn's disease...
If you're doing better, be greatful and let the meds work. Take care of yourself and read up on Lupus to understand what you should/shouldn't do to take care of yourself.
For example = sun exposure - I was bad this afternoon. I was pulling some weeds from a few pots on my deck for under 15 mins with no sunscreen - now I'm covered with blisters all over my chest/arms.
I have to warn you that when I started reading about the disease, I started freaking out - because of the worst scenario problems. Remember that with a good partnership with a good doctor, taking care of yourself and taking any meds they perscribe, you can live a fairly normal life with a few bumps in the road... Just don't let it all get to your head. We can make ourselves loony.
I just got off the phone with the hematologist I met with two weeks ago. He's as befuddled as I am. For the past 3 years, my ANA's have been elevated up to 1:640. He has copies of the lab work. This time, they were normal. He retested it 3x and had it sent out to another lab for confirmation. He took the blood himself, and it was labeled while I sat there - so there's no chance the samples got mixed up with someone else.
I'm supposed to go back in a couple of weeks. I somehow find spontaneous healing unlikely.
So, even a veteran of this disease, gets flustered!