Yeah, Rosie..I feel the same and you are an inspiration to me as I am trying to accept hearing that I have lupus..I have searching for answers for almost three years now. At first, everything pointed to MS but I did not have active lesions so they started looking at lupus and at this point, this is what we are dealing with.
I, too, have alot of faith in my Lord and know he will see me through and that sustains me everyday. I have started Plaquenil about six weeks ago and am waiting to feel better, Dr says it can take up to 4 months to notice a difference. I am ok with that, have been hurting alot longer than that. Just want to know what to expect. Dr did not tell me alot when he told me results of my ANA..thinking he is waiting to see how I respond to the meds and will elaborate further when I go back to him.
You hang in there as I will and maybe we can help each other. I have not had alot of response out of this website so I was a little disappointed but I will give it another try.
I have recently been diagnosed with SLE which is affecting my brain and CNS along with many other symptoms. I am very tired, nauseated, light headed, have ringing in my ears, and have noticed lately am having a lot of hot flashes (or at least that is what I call them) I get a hot feeling all over expecially in my face, face turns red, sometimes start feeling bad all over.
I am so tired.. I have started Plaquenil, 400mg a day about 6 weeks ago and cannot honestly say I have noticed any difference. The heat just kills me and drains me. My head hurts alot and I have cracking popping sounds in my neck and head. Feel weak at times with nausea, lightheadness and just have to go lay down until it passes..feel shakey at times.
Does all this sound normal for lupus..just wanted other opinions..am I expecting too much that the Plaquenil will make me go into remission. I have felt so bad for so long, I think I have forgotten what it is like to feel good. I am a very positive and spiritual person but I have had so many bad days it is hard sometimes to always be positive.
Just wondering..tried to do some research but don't want to read everything out there...just too much information.
Thanks to you, Lisatru62..I needed this info too. New to this diagnosis and forum. I appreciate any info I can get at this time. I have done alot of research but first hand experience is what I need right now.
I want to hear from other people who are experiencing the same as me so I will know it is normal as so far all I am getting from the health industry is that everyone is different and I understand that but I still like to hear first hand what other lupus pts are feeling.
I put an entry below this one titled "First time caller" and the only response I have gotten is from Elizabeth welcoming me to the forum.
I have just been diagnosed with lupus but I am 60 years old..have probably had it many years. My rheumatologist recommended the site "Lupus Foundation of America" and I have found just about all I need to know at this point on the site.
There are many sites on line but as always be careful what you read. I have been seeing drs for over 5 years trying to figure out what ws wrong with me and believe me I have done my research and I have found the sites I trust the most are the foundations of american, webmd, and mayo clinic.
Good luck to your daughter and you..I know it must really hurt you to see her hurt. My prayers are with your family. I have been a part of the Webmd MS site for over one year as the drs thought I had MS and I have to say that is where I got most of my support and information(from other people going through the same things I was--my lupus is affecting my CNS and my brain so I have alot of neurological symptoms) and I hope to find the same support and acceptance on this forum.
Let us know how she is doing..and remember lupus is different for everyone.
Bonnie..glad to offer my experience and symptoms are "feeling like I am in a fog" , of course, headaches (some in the base of skull and tension along neck and shoulders), burning in my muscles,hands, feet, tingling of arms hands legs feet, blurred vision, ringing in ears, nerve pain throughout, forgetfulness, forgetting what I am talking about midsentence, lose my train of thought, can't get words out, saying wrong words (as you described-salt for sugar) so frustrating because I consider myself to be intelligent and manage a 3 physician office and I just don't feel like I am in control anymore..I have to really concentrate on things that used to come naturally to me.
I have a very low vitamin D level..have been on 50,000 units per week for awhile now. have low potassium even though I take it orally. I have lots of spasms, esophageal, stomach, colon, bladder, back, etc..take bacoflen for that..antivert for dizziness, zofran for nausea, treating symptoms along with Plaquinel to see if I can go into remission.
Will see dermatologist Monday, have rash on arms, and legs..rheumy thinks also lupus but rash on feet and legs look a little different. sun insensitivity..
As far as test for lupus, it was mostly blood work..I have three positive elevated ANA..I also have had several MRI but that ws when they suspected MS and was watching for active lesions. I also have several old lesions on my MRI which rheumy said you have with lupus involves brain. You may only have to have consultation with GP/ rheumatologist and have blood work which probably would not be too costly.
Keep in touch..I do care about what you are going through..I am a firm believer that God puts certain people in your path for a reason and I think you probably belive the same way being a missionary.
Bonnie, I wish I could help you but I am newly diagnosed with lupus SLE.and I too am having just about all the symptoms you are talking about. the rash on my face is just now starting and I have not had the mouth sores but my rheumy asked me twice about both so those symptoms must be prominent.
I have brain and CNS and I believe chest/lung involvement. I have just been started on Plaquenil (?) an antimalaria med that dr says works slow but effective and not so harsh on your body. He prescribd me 200mg bid to be taken together if well tolerated and so far so good.
I hope by responding to you, it will put your post at the top of the page again and maybe someone who knows more will respond to yu.
Hey Jivon, I think I jsut replied to you on the MS forum. I am Judy the person who was diagnosed with lupus after being watched for MS for 2 years.
My rheumy who diagnosed me with lupus asked me two times if I ever had mouth sores/lesions and I havent. but that seemed to be of much interest to him. I also have been diagnosed with interstital cystitis, have had minimal hair loss, headaches, normal spinal tap, painful legs, cognitive issues.
glad you are going to see a rheumatologist. Good luck and God Bless.