Hello, this is my first time posting.
I have numerous CNS symptoms including 4 episodes of numbness (including one confirmed episode of transverse myelitis), migraines with aura only, possible seizure activity, cognitive dysfunction (including trouble with word finding and being "absent minded" - my mom found my cheese in my cupboard just yesterday), 2 hour episode of stroke-like symptoms, episodes of depression and anxiety, as well as several episodes of visual disturbances.
Tests results include
Labs: positive ANA 1:640 centromere and speckled patterns (all other lupus tests negative), false positive syphilis test during episode of transverse myelitis, low platelets, borderline low aptt
MRI: Lesion on spinal cord (brain has no lesions so neurologist does not believe symptoms are because of MS)
Spinal Tap: 3 oliglioclonal bands, increased IgG synthesis
EEG: Slightly abnormal with 2 sharp increases in brain activity during hyperventilation
Neurologist says it is clinically possible MS but strongly feels it is autoimmune related. Rheumatologist told me today that I have limited scleroderma and that accounts for both patterns of ANA and said neuropsychiatric lupus is not a possibility because my anti DNS ds and Anti ribosomal (?) were negative. I just had a spinal tap done in October but the tests that would have confirmed Lupus were not done. Rheumatologist wouldn't consider doing a second to give me definite answers. I am so frustrated!
Everything I read states a diagnosis of lupus can be made on symptoms and positive ANA alone, that a positive anti DNA DS is only there in about 50-75 % of cases and anti ribosomal (?) is present when there is psychosis (which I do not have). I am definitely going to get a second opinion but I just want to gain as much knowledge as I can and getting into someone new is going to take so long... After reading about neuropsychiatric lupus, I feel it can connect so many dots that MS and other disorders cannot. Has anyone had a lupus diagnosis with only the positive ANA and symptoms?
Hi there, I'm new to the forum, just diagnosed in September. My ANA was like yours, 1:680 and speckled, yet the rest of the blood work was negative or nonspecific but I was finally told it is definitely lupus. Symptoms include chronic severe headaches, arthritis in all joints especially hands, sores in mouth, anxiety, migraines with aura, mental confusion (finding my purse in the freezer, dog food in the bathroom cabinet, glad to know I'm not the only one), numbness of extremities, history of pleurisy and stroke, etc. I was sent to a rheumatologist back in 2001 and he rudely took one look at me and said "You can't possibly have lupus because you don't have a rash on your face. Come back when you get a rash and in the meantime, stop complaining about your pain." I cried all the way home.
Hopefully you can find a different rheumatologist, but it was actually my GP who diagnosed me last year and sent me to a rheumatologist for confirmation, though I finally got a rash from the sun and I think that clinched it. It's on my arms, not my face, and when I told this new rheumatologist what the old one said, he took his name and info and was going to report him to the AMA! He said only 30% of lupus patients get the rash on their face.
So long story short, in my experience you can get a lupus diagnosis with a positive ANA and enough symptoms even though other blood work results may be vague. Good luck.
Thank you donnalyn for your response. I am so glad your new Rheumatologist reported what that other "doctor" did to you, and that you finally got your diagnosis. The night I posted that, I had been reading and reading when I found this forum. I was so frustrated and disappointed. I had such high hopes of finally having some answers only to find out I am back where I started. I have been reading through this forum for the past 2 days. So many people and so many faces of lupus. Although I have not found an answer, I know I have found a great resource to use during my hunt - whether the outcome is lupus or not. I love the search function, being able to find so many threads relevant to my case as well as love the "brain fog" thread. I didn't know there was such a phenomenon that would explain turning my blinker on to go around a slight curve in the road, getting out of the shower and not rinsing my hair, putting cheese in the cupboard, opening the trash can only to throw the trash in the sink, turning on my blinker instead of stopping at a stop sign (thankfully no cars comming), and my favorite - rinsing out my son's potty training bucket and dumping it into the kid's seat instead of the toilet - that was fun to clean :).
Anyways, I am glad I found this forum.
Nikki, your story is very similar to mine, only your bloodwork has "helped" you out a little more than mine. I've been in limbo for 4 years now. I have the numbness, seizures, tinnitus, severe joint pain, overwhelming fatigue, yada, yada, yada... I do have Hashimoto's, but other than that, all my bloodwork shows is a positive ANA. Until I have some bloodwork to support a diagnosis, my doctor just keeps treating symptoms. He won't give me any Plaquenil until I have definitive test results. It's frustrating, but I've been to so many doctors, I just can't keep doing it. I hope you get answers soon. None of us want to be sick with anything, but if we have to be, it's nice to know what we're dealing with.
You need to let your rhumey know that there is NO test for Lupus and it is possible to have it without all of the bloodwork. It is diagnosed with bloodwork AND symptoms. Oh how our life would be easier if it were.
Originally Posted by nikkirae333
Anyway, I discussed the scleroderma and other AI diseases in your other thread but I just had to say that
I finally got into a new Rheumy, he is doing all kinds of blood work. He said he thinks it is "possibly" lupus cerebritis (he said it is also called neuropsychiatric lupus, lupus neurology, and CNS lupus) and feels the tests he is running is going to prove it is "probably" lupus cerebritis but with my symptoms and tests, I may never have a "definite" diagnosis. Once the labs come in, he is going to start me on plaquinel and a low dose of steroids. He really doubts I have scleroderma because I do not have symptoms (although he did allow that I may end up with it down the road). It is a relief to finally have a diagnosis that I can start treating.
I am glad that you have a doctor who is willing to run all necessary tests in order to find the cause of your problems and one who is honest enough to say that a definitive diagnosis may not happen. Even if it does not, he appears to be willing to treat your symptoms. I hope that the Prednisone and Plaquenil work for you. Be aware that Plaquenil is a cumulative drug and must build up in your system before you see substantial results. This could take several months. However, the Prednisone does begin to work quickly. I wish you the very best and please know that we are here to help you in any way that we can. You are not alone!
Peace and Blessings