My gp ran all the blood work normal other than low platelets and I’m ANA negative. I have all the criteria but he admits he is basically clueless as to what is going on and is sending me to hematologist. Just curious what this means. How common is negative ana. I have to admit that I am disappointed left with no answers and I really can’t find much online about it
Did fibromyalgia come up as a possible diagnosis, chasity?
Dancermom- he didn’t even think fibromyalgia was an actual medical condition.
Okay, that is a problem, and an indicator that he is not the doctor for you (or for the over 4,000 patients on our fibromyalgia community). You might wish to join the fibromyalgia community to check it out in the same way that you have checked out our lupus community. You are welcome to belong to both as you sort out your diagnosis.
I don't know what to say. I know how frustrating it is to feel sick and have no answers. I had symptoms most of my life and started seeing rheumies 15years ago. I did have positive ana but everything else would come back normal so the drs. would dismiss me and say it's not autoimmune. I kept getting sicker until I was being pushed back and forth between neurologist and rheumy. One would say has to be autoimmune and the other would say has to be neurological. Well i finally found the right dr. He did a lumbar puncture and found clinical evidence n my spinal fluid of autoimmune disease. I have lupus attacking the nervous system and brain. It was a long hard road for me to finally get a diagnoses. I had to find the right dr with experience with this type of lupus. Also I had become very ill because of it and the drs. had to start taking me more seriously. I'm sorry you didn't get your answers you needed. Hang in there, keep fighting. Hopefully you will find some answers soon.
Thank you dancermom. Fibro was my first thought but then I developed the rash and swelling and lossing my hair but I know they can overlap I am just in the beginning of my diagnosis so it will be a while and I’m so thankful for the support here!
Dr. Keenan at Duke in NC might be a good choice for a second opinion. Duke has a Lupus Clinic.
There are all sorts of autoimmune diseases that affect your blood counts without being lupus I have AIHA- autoimmune hemolytic anemia which primarily affects my RBCs but sometimes spill over into "Evans" syndrome which also affects platelets This is an independent disorder from my lupus and doesn't affect my ANA I am followed by both a hematologist and a rheumatologist
I am one of those sero-negative Lupus patients. Supposedly we are rare, though I have my own suspicions on that one. Anyway, all my blood work comes back negative, every time. No ANA indicators, no inflammation markers, nothing. But my rheumy is very good, and refuses to base his diagnosis on just blood work, or to limit it to the clinical requirement of four out of eleven criteria. Negative blood work does NOT mean you do not have Lupus, just like positive blood work doesn't mean you DO have Lupus. Period.
This is just my opinion, which counts very little in comparison to your own, but it sounds to me like you need a new doctor. Whomever you are dealing with clearly is not familiar with, comfortable with, or versed in autoimmune problems. My suggestion is to find out what rheumys are covered by your insurance, then do research online about them to discover which are known for dealing with Lupus or other autoimmune problems. (Not all rheumys are familiar with them!) Then ask your gp (whether you keep this one or not) for a referral to that specific rheumy. I was lucky, my insurance didn't require me to have a referral for specialists, so I hunted my rheumy down and got an appointment myself.
I wish you the best of luck in your hunt for what's going on. ::hugs:: I remember how frustrating it was to be told nothing was wrong, and to have to do my OWN research and hunting of information and resources. Hang in there, don't give up!
My ana used to be positive for years. Now I have been negative for a few years. This doesn't mean I don't have lupus, I do. I take plaquenil and would be much worse off without it. I also have fibromyalgia and a few other problems. They have to also go by your symptoms as blood tests are not the end all.
Many doctors don't know how to handle lupus but they don't want to let you know that. They are the ones who go by nothing but the blood tests. Just my own experience!