View Full Version : I'm new here with lots of questions..
04-05-2008, 01:13 PM
Hi, my name's Christy and I'm just starting to try to figure things out. I just got out of the hospital after being in for three days. On Tuesday I was shopping and after my left leg began to feel more and more heavy it suddenly buckled and I fell to the floor. My doctor sent me to the ER where they thought I had MS. They admitted me and did MRI's and a bunch of blood tests. My MRI was clear and most of my bloodwork came back clear except for the ANA which was positive. I am home now using a walker and basically living in my living room. They have done additional bloodwork to figure out if it's Lupus although I do not have any facial rash just occasional patches of redness on my cheeks.
Do any of you have experience with numbness/heaviness/weakness in your leg/legs? How long does a flare usually last? I'm on 50mg prednisone daily but how long until it starts to help?
I appreciate any help anyone can give me.
04-05-2008, 01:45 PM
Welcome, I cant answer all of you questions, but I'm sure the others will be along soon and can help you out.
I'm not fully diagnosed yet, I've had a long frustrating experiance with a rhuematologist who doesn't believe in lupus. Oh joy. My family doctor just place another request to a different rhuemy this week. I'm hoping I dont get lost in the shuffle.
Any way...flares can last from a couple of days to a couple of weeks. The only thing for certain with lupus is that nothing is for certain. Common complaints range from exhaustion, raches joint and muscle pain, foggy memory rashes, hair loss (please keep in mind not ever one gets every symptom)
There are alot of great posts in the symptoms section. And there are explenations of medications in the med section.
This is a very friendly little site, and there is alot of people who are very helpful and willing to share what they know. Unfortunately I do not know alot...and I have a terrible time remembering information.
Which means you have just been greeted by the village idiot...the mayor should be along soon :)
04-05-2008, 01:47 PM
Welcome Christymarie! We're a friendly group here with all sorts of knowledge and experience to share. Even more important, we support each other, laugh and cry together.
Not everyone with lupus has the malar rash, I've never had it. My cheeks do get red from time to time - but when it was really bad, I learned I had rosacea! Here I was blaming the lupus...
Lupus can react differently with each person it touches. I hope that SaySusie chimes in, she has so much knowledge, she'll give you some great resources and information that will relate to what you're experiencing.
I hope your symptoms recede, and that you're feeling better soon. I just wanted to say hello, welcome you here, and hope that you'll be an ongoing part of our group.
04-06-2008, 12:09 AM
Like Hat Lady, I don't have the malar rash. Rashes on chest, arms and shoulders are typical. We really support each other on this forum and we are glad you joined us.
Saysusie will pop in soon hopefully. She is very knowledgable and great resources. I hope you get to feeling better soon.
04-06-2008, 12:26 AM
Ive never really had the rash that everyone talks about, but i have colapsed multiple times, i had to have a friend carry me up the stairs because i was to weak to climb them. That tends to come and go, i also tend to have arm problems especially with them going numb. Mine is apparently from inflamation which i was on prednisone for and take it every time i have a problem it starts working in me after about 5 days i notice the sores (mouth, nose, ears) start to go away, but again everyone is different, hopefully soon you will start to feel better!
I was diagnosed with SLE in 2004. Lately I've been having symptoms similar to yours. My right foot will drag a bit as I walk, and my foot/leg feel very heavy. I also get tremors in my right hand with "electrical shock" pain running up my arm. It's like a quick jolt of electricity, if that makes any sense. I also have optic neuritis in my right eye. I get a "spasm" of some sort in my eye where I cant focus. I saw my eye Dr. and my regular MD and they referred me to an opthamologist, and a neurologist. I get an MRI done this coming week. Both of them said MS was a distinct possibility. Overlapping illnesses can happen, such as SLE and MS together. I know this probably doesn't answer your question, but my symptoms are similar to yours. Your MRI was clear, so it may be something else entirely. I hope you can find the answer. Until then, just know that you are not alone, and that many of us are looking for a proper diagnosis. It can be a long, frustrating, painful ordeal. Hang in there.
04-06-2008, 06:41 AM
i get those spasms and 'electric shocks' too. the shocks i get in my legs. i always end up scaring the ppl around me. its such a sudden and sharp uncomfortable feeling. sometimes painful that i would suddenly scream out. but its shortlived then im fine.
i get all those things you listed, different times, to different degrees as in sometimes worse than others. but then other times everything together, plus other painful uncomfortable experiences. make sure your docs do very thorough checks and rule out any other major concerns that are usually associated with lupus or develop because of lupus.
like Rob says, several things can come with it or because of it. ive already been diagnosed with some other conditions.
the time line for a flare im sure varies for everyone, it varies even for me. this last bout i had took me a month to be able to walk and move around again. but even now i still struggle with it.
but it can be a week, a couple of days. you will just need to recognise the signs of your flares. make sure the ppl closely around you know the signs too.
when i just got diagnosed, i had the facial rashes every month, not anymore. they've moved to every other part of my body. neck to toe tip. some break out are worse than others, where my skin hurts anywhere you touch me. and they look awful. and then when they are clearing up, i look like ive been physically beat up because of scars left behind. i looks kinda bruised.
anyways, im sure u'll be ok. try to maintain a good diet too. check you doc. everyone here will help you.
Rachie, you explained exactly how this shock sensation feels. Intense enough to wince in pain, but short lived. Not much fun. It's good to see you here, you sound like you are doing good. I'm glad.
04-06-2008, 11:42 AM
Lupus can involve the central nervous system in several ways. As Rob mentioned, one of the conditions that can occur is MS. MS is characterized by recurrent episodes of neurological dysfunction, such as loss of vision in one eye (lasting days to weeks), weakness or clumsiness one one side of the body, double vision, among others. You should be encouraged by the fact that your MRI was normal and that there was no visible structual neurological disease. In any case, ask your doctors to test you to see if you are having any CNS involvement due to you lupus.
The neck and shoulder pain and the electric shock like sensations , and tingling in the extremities can come from neck problems (caused by inflammation due to lupus and/or Fibromyalgia). You might want to ask your doctor about a cervical spine MRI scan as well. And since CNS involvement with lupus can sometimes cause strokes, I would suggest that you have your stroke risk factors assessed by your doctor.
I'm glad to hear that your doctors are taking this seriously. Please keep us posted on what you and your doctors find out.
Peace and Blessings
04-06-2008, 07:07 PM
Hi, Christymarie!. As Sits in the Corner says, this is a very friendly place - welcome! (However, she is hardly the 'village idiot'...she gives all of us a lot of great support...you'll see!)
Seems like your doctors are being very thorough. I have a friend who is treated at a clinic in Chicago that specializes in lupus. I can't remember the name (or much else some days!) so I'll email her and ask and get the name of the place for you. Might be useful, if you decide you need more specialized care.
I always find the Lupus Foundation of America website helpful for info on diagnosis, symptoms...that sort of thing. It's www.lupus.org. Of course, the docs are not sure what's happening with you yet, so it may not be lupus. Still, it's a good place to start.
I get very red cheeks (in fact I look like a clown right now! :roll:) and sometimes nose, chest. But it's not a raised rash - just incredibly red. Not everyone gets that, though.
Hope you find this forum helpful. It's made all the difference in the world to me. Welcome!
04-13-2008, 09:08 AM
Hi, Christy. I got the info on the doctor/clinic in Chicago from my friend. The doctor is Dr. Rosalind Ramsey-Goldman. Below is a link.
My friend says that this doctor only works with patients with lupus, so they go through some screening before accepting patients. I'm sure the website will tell you.
Maybe the info will be helpful, if not now, sometime down the road.
Hope you're doing OK!