I am so excited to find this online support group, unfortunately there are no support groups to go to in my area. I was just diagnosed with lupus (SLE) in September. I had 2 positive ANA tests and 2 positive ENA panels. I am feeling a lot of frustration towards this disease. First off I have a lot of joint and bone pain, the doctor gave me Planqunil (sp?) and it has helped a little. But, I am sooo tired almost all of the time. To the point where I want to cry. I have had a few urine tests that showed blood, bacteria and mucous in my kidneys, so I go to a kidney specialist and he says "there's no protein so I don't think you have Lupus Kidney." Why o why do I have blood in my kidneys that antbotics didn't even clear up? I have NEVER had a kidney infection before. The specialist even starts to question whether or not I even have Lupus. No, I am not losing hair, I have no rashes and I have no ulcers in my mouth, but that doesn't mean that I don't have it, right? For about 2 months I have been having short term memory problems, trouble thinkg and concentrating and I am easily distracted. I also sometimes have problems getting words out and saying what I mean. I have always prided myself on a sharp mind, but now that's history. On Wednesday, I was at work and started feeling real funny in my head (kinda numb on the tops and felt just weird) and I couldn't speak without slurring my words. It lasted about 10 minutes or so. Iwas sent to the hospital and they thought I might of had a stroke. But, nope. The doctor there said my brain looks great and it doesn't even appear that the lupus has affected my brain. Then what is wrong with me? he even says I look good for a lupus patient and that normally you can look at a lupus patient and tell they are sick because they look malnourished. Ok, so are you saying I'm fat? It's true I don't have weight loss, rather weight gain for about 2 yrs. Sorry for ranting so much, but awwww that felt good . Thanks to those who "listened".
First, let me welcome you to our forum and to our family. We are so happy that you found us and you will find that everyone here is always willing to listen, to give you support, to provide you with answers, to comfort you and to let you know that we understand and you are not alone!
One of the most insidious sides of Lupus is its unpredictability. Lupus NEVER looks the same on any two patients. The symptoms you described could be Lupus, however, they could also be due to one of the other autoimmune disorders (what I call sister diseases). Your symptoms could be due to a condition called Fibromyalgia (except for the ANA issue). There are very many of us who have Lupus with overlap diseases. I, myself, have Lupus, Fibromyalgia, Raynaud's Syndrome, IBS and TMJ!! So, that might explain the ANA without some of the other standard Lupus indicators. Like you said, just because you do not exhibit the standard indicators, does not mean that you do not have the disease. By the same token, it also does not mean that you do, in fact, have the disease. It does, however, sound like you are suffering from some form of autoimmune disorder. It will take a lot more testing before any doctor can give you a final diagnosis.
Lupus is famous for baffling doctors because its symptoms are not always present at the same time, they develop slowly and they can mimick other illnesses. So, do not be too frustrated when your doctors say "Yes", "No", or "Maybe". It is pretty common when trying to diagnose Lupus! The problem is that the testing process (to determine exactly what you have) is quite lengthy and can take anywhere from months to a year before you get a definative diagnosis.
Kidney involvmemt with Lupus is not uncommon. Here is a web-site that explains the differnt types of Kidney involvment with Lupus patients:
You mentioned that you were taking Plaquenil..it takes a while for this drug to build up in your system and for you to notice its effects. However, once it does, it is quite helpful for most Lupus patients. So, I have to say that you will need to be patient with respect to the Plaquenil.
With reference to your memory and your concerns about TIA or stroke: Cognitive dysfunction in people with Lupus is not uncommon. There have been many studies to determine the exact mechanism for this, with no real explanations being found. However, it is now believed that, in lupus, the antibodies that attack double-stranded DNA and are known to contribute to kidney problems are the same antibodies that react with similarly structured molecules called NMDA receptors, channels that control the activity of glutamate, the neurotransmitter that stimulates nerve cells. These same antibodies are involved in the programmed death of neurons, and researchers have found them in the cerebrospinal fluid of lupus patients. They believe that these factors showed a possible pathway to the neurological symptoms some people with lupus experience, such as the ones that you described.
Central Nervous System involvement is not uncommon in Lupus patients. The symptoms include: high fevers, seizures, psychosis, meningitis-like stiffness of the neck, cognitive dysfunction (confusion, fatigue, memory impairment, and difficulty expressing and/or collecting your thoughts).
I can truly understand your frustration, we have all been where you are and we know how scary and frustrating it can be. It is, unfortunately, a waiting game. However, you can help your doctor's and yourself by learning as much as you can about Lupus, its symptoms, treatments and medications. Also, do not let the doctors tell you that what you are feeling or experiencing is not real. Insist that they take you and your symptoms seriously!
We are here to help you as much as we can...I wish you best. If I have not answered your question, please do ask again. Someone will research your questions and give you the best response that we can.
Peace and Blessings
Thank you so much for your reply. It was very thoughtful of you to go to such a caring and thorough explanation. It is really nice to have a place to go to where people understand what I am saying. I try to talk to my husband about how I am feeling, but he doesn't understand. Again, thank you so much!
You are very welcome. That is why we are here, we want you to know that you are not alone and that we not only understand, we have also been where you are.
Join us often! We are here to help you
Peace and Blessings