It was long ago and you need new testing most definitely. Isn't there some kind of state insurance or medicaid you can get on, get to a doctor and get tested. Lupus is something that needs medical attention and treatment. The fog issue can be helped with medications. You really need to do this. Some states you can apply online. You can also go in to your local social security office and ask for help applying for disability. You can do it online at www.ssa.gov. as well. What's worse? Having your children put you in a nursing home or applying for disability? You must qualify for some help. In order for a fair assessment you need to see a physician asap. HUGS, feel better, JulieView Thread
Lots of people with lupus take those meds together. Your certainly not alone. I take 26 pills a day. Since lupus is systemic we need pills for the conditions lupus causes as well as for lupus. I am also on blood thinners, I take plaquenil and cellcept and meloxicam (an anti-inflam) for lupus and prednisone during flares as needed. I also take meds for other conditions and for pain.
Your the norm. I wouldn't sweat it. Love and HUGS, Julie ps some lupies are having good results with BenlystaView Thread
It is good he is referring you to a rheumatologist. The rheumatologist will be much more knowledgable about the symptoms you are experiencing and the rash. You might want to also ask for a referral to a dermatologist. A derm can do a skin biopsy and that also can help dx if you have lupus. A positive ANA doesn't mean you have lupus and a negative one doesn't mean you don't. Unfortunately. There are 11 clinical symptoms recognized by the ACR to dx lupus. http://lupus.webmd.com/tc/lupus-criteria-for-diagnosis-topic-overview and most rheumatologists use this for dx (you need 4/11) Don't be frustrated...see the rheumatologist and let us know what happens. Keep a list of your questions and symptoms. He will do more detailed tests on you as well. Your GP really doesn't have the training to dx or help you with it anyway. Best of luck to you! Love JulieView Thread
I was told the trigeminal neuragia was likely NOT from the cervical spine issues. I'm just wondering what's going on since it seems weird to me that my spine compression would be causing my trigeminal neuralgia (and I have it BAD-all 3 branches sometimes) and geniculate (on right only) and occipital and tarsal- how could the cervical spine cause tarsal nerve problems?. IF THE SPINE problems can cause all that then I'm all in for the surgery...see what I mean?
Idk what to do. I just got over a bout of sacroiliitis and it was awful. They did xrays and only found a slipped vertabrae (that was NOT the pain I had during the attack) I couldn't lay straight or stand long or be touched, my hip and pelvis screamed in pain. Couldn't get up or sit without help. JUST AWFUL. My grandmother had lupus (undx'd and dx'd as RA) and ankylosing splondylitis. Her spinal bones were fused terribly and she suffered from sacroillitis so I knew exactly what it was when I had it. She also had extensive nerve problems and again Idk if it was from the lupus damage or her spine fusion issues.
Q: Is this an issue with the nerves too?
I apologize for all my confusions. I have many specialists and have to coordinate my care myself quite often. I'm not medically trained in the least..just looking to live a life with quality. ThanksView Thread
I have SLE. I have positive ANA's dsDNA, antismith and all of em on a direct ANA panel except for the histones.
However, on the titer I'm always negative.
I have had intermittent tests (and consistently for the past year and a half) Direct ANA Test Results that say "Unable to obtain results due to immune complex issues". It raises eyebrows but I don't know what it means. My new rheumie has vowed to find out for me. My last rheumie said my ANA's are too high for the titer to work on me and people like me fall through the cracks on a dx. If it wasn't for being a classic case with 10/11 clinical symptoms (from the ACR) and haven't the luck of the direct ANA and skin punch biopsies I might still not be dx'd. (Was dx'd in 2010)
Has anyone else EVER HAD results unobtainable reoccuring from the Direct ANA due to immune complexing issues. I have been through two different labs now and done on a stat basis. LabCorp and Quest. I also had a private lab who was interested in my antibodies do one and the lab guys said my blood looked like little pacmen were eating it up. Idk what this means. It is frustrating.
Thank you to anyone anywhere who can help me. I see my rheumatologist at the end of this month on a follow up and hopefully there will be more answers for me.View Thread
Doc and Lisa! Thanks so much for the reply. To complicate the situation, my neuropathy (in extremeties) started over ten years ago, long before the lupus dx and before having any spinal issues. Can spinal issues also cause the tarpal tunnel? Does that make sense? Will an ANCA antibody test help?
And to Lupylisa, my sister in arms here, lol, I ALSO HAVE CERVICAL DYSTONIA attacks during some TN attacks! This is really amazing meeting you. Also Lisa, I have had MRI's for my trigeminal neuralgia of the brainstem and cranial nerves that show nothing. My last MRI of my neck and cervical spine recently is what brings me to the point of surgery, although I am concerned about the nerves in the area getting WORSE if the problem is from inflammation. Not to mention one fusion begets another unfortunately. It's a big decision.View Thread
Just want to add that I am concerned that having the spine surgery would do nothing for the compressions if they are caused by lupus. Will a nerve biopsy give me the answers I need to make an informed decision? I would hate to have the surgery and then STILL keep getting compressions..Thanks, JulieView Thread
Could have been some extra bad brain fog due to the traveling and new experiences and stress and exhaustion or possible beginning of a flare or could be more cns related lupus problems. An MRI and visit to a neurologist might help calm your fears of not knowing what it was.
I had an experience once where I was in a very familiar situation yet I felt as if it was all somewhat foreign to me and it took me a short while to recover to the who, what and where.
I did have tests which showed no brain lesions which made me feel alot better. I do have cranial neuropathies and a tendency for inflammation in my nerves and blood vessels that do cause some brain fog.
I started playing word games and brain games more often. Luminosity is alot of fun, but any old free word game is helpful.
I also have no trouble with my work even though I have the same fog issues you sound like you do. I think I've been doing it so long it's second nature, lol.
God Bless, write anytime, HUGS, Julie Phx, AZ ps hope you enjoyed Israel (my mother and sister lived there many years)View Thread
It sounds like sacriolilitis! Esp with coilitis issues and lupus. It can cause inflammatory arthritis. It happens to me and I can barely walk and stand and get into extreme pain. It is inflammation in your si joint and effects your hips, pelvis and lower back near your tailbone. look up inflammed si joint and you will find more info. email me anytime as well..firstname.lastname@example.orgView Thread