View Full Version : Help please
09-17-2008, 07:44 PM
Hi I will try to make this not a book so here goes. I am 26 and it started with foot numbness in foot. Then leg pain swelling from knee down, got dvt ultrasound was negative, went to all kinds of doctors didnt know what was wrong. About 2 months later my other leg swelled and feels like a pain of soreness annoyying. Its hard to walk but swelling is not red and not immensly swollen. heels hurt and some numbness and at times ice cold feet. Also one hand gets cold and feels weird. Ok i go to another doctor and I test positive for ana, also RF, she is now doing future testing and sending me to a rhumetologist. I am sooo worried I cant sleep and going nuts. I have no energy but does it sound like lupus and even though i tested positive what are my odds of having autoimmune disease or lupus. I obviously have something because of tests and legs. I have no rashes or anything though, I know your not doctors but please get back and tell me what you think might it be. Hoping not lupus but I tested positive for RF rumatoid, and ANA. Also White male which I heard mostly women have lupus or african american more common. Please get back tyty
I'm a 40 y.o. white male and I have Systemic Lupus and MS. I have had some of the symptoms you are experiencing. Your symptoms are something to be concerned about, and you are smart to jump on this and get some answers from your regular Dr., as well as a Rheumotologist.
However, these symptoms alone do not necessarily mean you have Lupus, or another autoimmune disorder. I know you need an answer, and this is keeping you up with worry. You are absolutely doing the right thing here. You have seen your G.P. and you have been referred to a specialist. You are also educating yourself about the possible causes of your symptoms. You have done everything you should do up to this point. Now, you need to let your Dr. and Rheumo do what needs to be done as far as tests go, to help you find an answer to what is causing your symptoms.
I know what it's like to be worried to death, and to go without sleep over things like this. Believe me, you are not alone. Feel free to come here and talk as much as you need to. Try to stay focused on your next appointment, and take things one step at a time to the best of your ability. Hang in there.
09-17-2008, 08:46 PM
ty so much for the response. I also get crazy spasms and are soo scared I am going to die. Thats what I keep thinking about death, but I dont think this will kill me this soon. The leg keeps flaring up and I fear blood clots even though they were ruled out I think leg is getting worse get back ty so much for support.
09-18-2008, 04:19 AM
Hi and welcome pokerguy
Take a deep breath...you on the road to finding out and getting help. It can be a slow and twisty road. Stress can aggrivate so (dont laugh) but you're going to have to chill and let go of your worry.
Some things you can do to help easy the swelling and pain are as follows. Feel you knee ankle and feet for "hot" spots. Skin feels slightly warmer around the joints. You'll want to alternate warm and cold compresses in these areas.
Tensor "soft" wrap around knee brace. Not the one with the stiff ribbing. Wear them/it when your knee joints are hurting. Put them on and take them off as needed.
Diabetic compression socks. You can buy these and the braces at your local drug store. You do NOT need a perscription. The socks are thick and come in white and black and should come up to just below your knee.
I put mine on just before I swing my legs out of bed. Evenutally .. once you get sorted out on meds and excersize routine (dont laugh you will excersize) you will not need to wear these socks 24/7 just first thing in the morning.
Ask your doctor to refer you to a specialist and you may have joing issues in your feet, xrays should give an answer to that. You can be fitted for orthitic inserts for your shoes. They really do help.
I wore them steady for the first year and now I can get along quite well with out them so long as I wear shoes with good support.
Back to the diabetic socks for a second. I am not a diabetic. These are just very good compression sock that help control the swelling.
I'll have more to share with you later but for now I have to get to work.
Hope you are having a good day :D
I'm not fully diagnosed but they have made me welcomed here and you will be too. I'm still in limbo but odds are pretty darned good I do have lupus.
I have had one possitive ANA and a boarderline and two negatives. But I have the rashes and a few other goodies. My mother had lupus and my sister has it as well.
It's NOT a death sentence...take another deep breath and read this site. Lots of good info here.
:cry: First, I would like to introduce myself. My name is Theresa but I will go by YPT (Youth Pastor Theresa).
As a Youth Pastor, I should be on here talking faith for healing, but right now, I want to be real about how I am feeling right now.
I constantly go to doctors who make me feel like I am stupid or at least, going crazy. I feel so negative and out of sorts after I leave a doctors' office. Sometimes I DO feel like I am going crazy and that these symptoms are all in my head.
Some days I am so depressed, but I can't share that with my church family because people usually hold any type of pastor in high regard and a pastor is not really HUMAN. A pastor who cannot overcome his or her sickness is not REALLY A PASTOR.
So I have chosen to come on this forum so that I can talk to people who truly understand what I am going through.
09-18-2008, 09:18 AM
H pokerguy, sorry you are going through this. I had the same problem last year my feet lost most sensations and I would trip alot. I went to the doctor and the would scratch me and say I was fine and also tested for diabetes. I also had the same problem with my hands which ten years ago I was told it was because of carpal tunnel. The symptoms you are describing are the same ones that drove me to go to the doctor every week even though they would look at me like I was crazy until I was diagnosed with lupus in april. Unfortunately the diagnosis will not stop doctors from treating you like you are exaggerating. Good luck to you. I hope you get the answers that you are seeking.
YPT I hope you find the help that you are seeking in this website, dealing with this problem is hard enough when people know you are not feeling well, so I cannot imagine having to pretend that I am alright all the time. Good luck to you.
09-18-2008, 02:27 PM
Hey all ty for the great responses. This seems like a caring site and appreciate all the help. Does it definetly sound like lupus to you all, I know your not doctors but an opinion wouls be cool. Now I am having chest problems but ekg was fine. Am I losing it because of such fear of dying just because I tested positive for ana and RF. Can I still not have lupus or any other autoimuune disease. What are the most common symptoms, I know though there are soo many get back tyty.
09-18-2008, 02:50 PM
Lupus can vary from person to person, and a positive ANA does not mean you have lupus.
I am not fully diagnosed yet, I have had 1 possitive ANA a boarderline ANA and two negatives.
My doctor's are not willing to commit to a lupus diagnoses.
I believe I do have lupus for a number of reasons, but this just goes to show you how difficult it is to get diagnosed.
It is a long slow process. The main thing is that your doctor is looking at treatments for your symptoms.
Have you been to see a rhuematologist? This is the person who can test you further for lupus or get to the bottom of what is happening with you.
In the mean time do everything you can to control the swelling and the pain.
Have they put you on any medications?
Truely you have to push your worry off to the side for now and focus on doing things that are going to help you to feel better.
Keep at your doctor for answers and assistance in managing your symptems.
You can have lupus and not have rashes. The rashes may show up later or not.
Basically with lupus, your immune system is out of wack and attacking the joints and organs of the body. So there is not text book way that this happens.
Manage your stress, eat healthy and do what ever you can to easy your swelling and pain. As I mentioned the tensor braces are wonderful for taking the stress off your knee joints.
Less pain...less swelling.
Thank you jaideni Tadpole for your reply. I would like to im if that is necessary on this site. Please let me know. Thanks again.
09-18-2008, 05:57 PM
Hi I am going to a rhematologist tommorrow morning I am nervous. I am skeptical because I don have joint pain. It started with one a little numbness in one foot then up the leg, 2 months later the other leg. They didnt come simultaneosuly. In RA I heard its more joins, my legs are not really swollen just the calf and lower leg became more fatty is the best way to describe and about an inch bigger, they are serious muscle spasms and weird pains not EXTREME pain. I have generalized anxirty so now I equal a nervous wreck and think every pain is a symptom. So please tell me what you all think. Also if I was ANA positive and RF, RUMATOID FACTOR positive that must mean I have something correct, also I have the weird muscle pains but not JOINT pain. Plus my right hand feels weird sometimes and feet get ice cold alot. But I have had ice cold feet in the past, not to mention damn anxiety for over 10 years. If anyone has input get back, I appreciate all those who care ty.
09-19-2008, 02:10 AM
Welcome to the site. My name is Kathy and I have SLE Lupus. I have had this illness for over 45 years. I just want to say that just because you have a positive ANA and RF factor does not necessarily mean that you have Lupus. Actually Rheumatoid Arthritis is kind of rare with Lupus. It is good though that the Rheumatologist is testing you for it. I hope that you do not have it. If it does turn out that you have Lupus, they have a lot of good medications for it and it is not an automatic death sentence anymore. You have to alleviate the stress as much as possible as stress is one of the worst things for Lupus or any other auto-immune disorders. Try to take a deep breath and relax if that is possible. I know that you are scared. I know that when I first found out for sure that I have Lupus, I was scared too, big time. If you have Lupus, you will learn how to deal with it. I hope that you keep posting and let us know what is happening ok.
09-19-2008, 08:06 AM
Well the good news is here. My other tests came back negative, I also just saw the rheumatologist today. He told me almost 100 percent sure no autoimmune diease weeeeeeeeeeeeeeeeeeee. My symtoms are obvious symotims of something else. So at least I know I am clear in this field. Thank you all for the support, I hope you all feel better and WIll get better. MAY GOD BLESS.
That's great news pokerguy! Hopefully you'll get this figured out, and under control, but it's awesome news that it's not Lupus or another autoimmune disorder. I'm happy for you!
09-19-2008, 09:01 AM
I am very happy for you that you do not have Lupus. God Bless you sir.