I don't know if I have Lupus, but my doctor suspects that I do. I've had numbness, tingling, and muscle weakness in both hands/arms and feet/legs for over six years now. It seem to be getting more noticable as time goes on. Also my brain no longer works as well as it used to. I have a lot of problems remembering things (putting weird things in the fridge, forgetting appointments, sometimes even turing off the stove--yikes!) Lately I've had a hard time finding the right word or being unable to remember the correct word for things. I have arthritis in my neck and at least one ankle, bursitis, and that lovely blue mottled look to the backs of my legs. I also have weird, itchy little bumps on my elbows and finger joints off and on, and peeling hands periodically. I had pluersy (sp?) about two years ago, and now wonder if that might be something as well. I've been tested by a neuro and found to be okay. A Rheum. also ran all the test and said nothing noticeable, but I can tell my doc is worried and thinks that I definately have an AI disease going on. However, he says that there is nothing else that they can do for me at this point except wait and see if it gets to the point that it's diagnosable. Of course, I wondered if this is all in my head, but I KNOW that there is something seriously wrong with me. My husband who is tougher than nails and so brave when it comes to handlng pain, is finally realizing that this is real and scary stuff. Sorry this is so long, but I'm having a hard time realizing that somethings there just isn't anything you can do. Doctors aren't miracle workers, and they don't have answers to everything. Thanks for creating a great place to get information though, it's been very helpful for me!
Hello, heartshome. The limbo of waiting for a diagnosis is really frustrating. My doctor used to compare it to waiting for a polaroid picture to develop, sometimes you only see bits and pieces, and you have to wait until the whole picture develops befote you can tell what it is. Much of what you are describing does sound consistent with lupus - unfortunately, there are many autoimmune diseases that can mimic lupus. Some doctors will treat you based on your symptoms without a firm diagnosis, and if your doctor is reasonably sure you have a lupus-like disease, he may be willing to start you on a medication such as plaquenil without a firm diagnosis, since it has a very good safety profile. And your doctor should certainly be able to prescribe anti-inflammatories and/or medications for pain to provide some symptomatic relief. This may be a situation where you have to be very assertive in pushing your doctors to continue to look for answers, and to treat your symptoms so that your life doesn't get put on hold in the meantime.
You mentioned that you had been seen by a neurologist - do you know what tests were done? And if your problems with memory and word confusion have gotten worse since you were originally seen, it might be worthwhile to schedule another appointment.
Please know that many of us here have been through a lot of similar frustrations when getting a diagnosis, so we understand how frustrating and nerve-wracking it can be. Please feel like you can come here anytime you need to vent, or ask a question, or just get a cyber-hug. There are alwaus people here to listen and care. Welcome - we are glad you are here!
Welcome to the Forum! I'm really glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I'm really sorry that you're having such a hard time getting a diagnosis , but, as Marycain said, many people on this Forum have had/are having a similar experience, so you will find a lot of support.