I am being checked for Lupus on the 20 of Feb, I have had many of your symptoms that I have read,I am 39 years old and have had sore joints for 10 years, x-rays show no arthritis. For the past 6 months more symptons are added to my list. Some of these are sore jaw, hives, stiff fingers,ceized hip joints, feels like a vise in my left chest area, joint spasms that just dont want to stop at night when laying down, feeling dizzy and vomiting and so on, when does it stop?????
LuLuBell
Hi LuluBell,
I am new to all of this too, but have found great comfort in realizing that: whatever your diagnosis is, it is merely a name for what you have already been dealing with for some time.
That helped me put all this in the right perspective. It makes "lupus" or whatever diagnosis you receive less overwhelming. I have read almost everything on the web about auto-immune disorders and, for the most part, information is power. when I was finally diagnosed with lupus last Aug, I was armed with some knowledge and with enough calm to ask some vital questions.
One of the most important advice I can offer is: (no matter your circumstances, no matter your age) do NOT go to the doctor without a friend or relative you trust to be your brain and ears- in other words, take a patient advocate.
My husband, more that anything, wanted me to be okay. He also is slightly hard of hearing, so he wasn't the person to help me hear what the doc was saying. By mutual agreement, one of my daughters went with me. I introduced her as my advocate and the doctor and staff thought it was great. She sits in on all conferences/exams/tests. She takes notes, prompts me with questions that I wanted answered and even asks a few of her own as she writes notes of the doctor's instructions and advice.She (Cris) also keeps the family informed if they have any questions. this is a family-impacting disease, there's no doubt about it. Our faith has grown stronger thru this. I can't say why me cause I wouldn't wish it on anyone else- so I figure "why not me"- He has equipped me with sufficient strength thru Him.
I just got a new book today called the Lupus Book (under $20. I am only 1/3 the way thru it- but it is great!! It has the best explanation of what the blood tests are showing, so now I can at least feel part of the testing process unstead of the lab's favorite blood-donor. haha
Hang in there- there are lots of us out there who keep a positive spin on this the best we can. Most of us find that venting briefly helps clear the tension but that it takes a LOT less energy to laugh than it does to cry.
Jeri
Jeri
Thank-you for supporting my mind, you do have a possitive attitude. I must find someone that could be strong with me. I am a single divorced mother of a 13 year old girl ( Sara ). I am currently seeing a man that has been through alot himself, he was crushed 4 years ago with a 28 ton front end loader , he died clinically 3 times in the emergency room. Was married now divorced, his wife could not handle the situation, doctors said he would never walk again(he is) what a miracle, he is strong minded. So I look back at his situation and say to myself it could be worse.I do get alot of strength from him. He knows what is going on with me and tries his best to understand.I printed some info off the internet, he has read it and understands a bit more. I know it will be a long journey before I am diagnosed, but in the meantime I would still like to chat and confirm certain symptoms that I have. As I mentioned in my first writting of symptoms does it sound familure for what Lupus is??? I have a few more to add.....Loose bowals,hair loss I also have had eye problems since 1989.
Thank-you once again for listening
LuLuBell
Hi LuLuBell,
BOY! you have a lot of symptoms and I'll bet a million questions right now. Doing your research now will really help you if you are not a person who goes crazy worrying with a lot of information. You know yourself BEST- trust that first. If you can handle a lot of info without freaking out, then study, study, study. My advice is to stay away from any alternative-medicine sites for now, because your doctor will only be dealing with established medical and laboratory criteria to attempt to make a diagnosis.
The average diagnosis can take 6 years or more from what I've read, but I don't know if thats from 1st symptom or once things seem pretty bad and you start trying to get answers while you're in a crisis. The first time I went to a doctor he had it pegged, but didn't want to believe it. it took 2 mos to get into the rheumatologist (get a good one), but he ran the rheumatoid and ANA tests anyway while we waited for my appointment. Seems I was pretty lucky- but then, I'm 54 & I've had this for a long time as we look back.
I am no doctor and have no diagnostic experience, but your symptoms seem problematical enough to warrant screening for the various auto-immune diseases. there are a lot of those. It's important to rule out whatnyou don't have as much as what you might have, as the various treatments for each kind may interfere with one another.
I know that I am not being specific enough with you, but you don't need a stranger (me)alarming you or blowing off your symptoms. You have probably had enough of that from friends, family and coworkers.
As you study what you find from the Arthritis foundation, the Lupus Foundation of America and big medical sites like Johns Hopkins, you will begin to see the pattern of your symptoms emerge. You could have an endocrine problem instead of an autoimmune problem. It helped me to read up on this stuff, cause I had symptoms that were significant for lupus that I didn't even know were important so didn't mention them to rheumatologist. I learned about them since I continued reading. (sores in my nose)
Look at these sites and see what's relevant to your situation.
Lupus is difficult to differentiate from other conditions, but you'll find out at these sites just what the doctor is looking at besides the lab test results.
I came out of the doctor's visits with a dx of systemic lupus and sjogren's syndrome. since I got "the Lupus Book" I've figured out what the rheumatologist is looking at in the blood tests to monitor activity of the disease now.
I am glad that you have someone who has been thru a lot that might be able to sit down with you and your doctor. Perhaps he culd sit in just when the doctor talks with you at the end of your visit. In any case, explain BEFORE the docotr starts your exam that you need someone in there when he/she starts doing a bunch of explaining stuff to help you remember. You may not even be able to get this "all together" for your visit on the 20th, but it's something to shoot for.
Something that really works for me is that when I have a question, I fax it over to the nurse and she hands it off to the doctor. I get a phone call the same day. Rheumatologists operate on a very one-on-one basis (or should) as each patient's case is highly individualized in everything. There ARE no standards- we're making history. :-)
I can imagine that you are feeling pretty frantic right now. You have a big load, raising your daughter and this mess can make you fearful of the future. Do you have family to lean on?
I am praying for your strength and comfort. Don't hesitate to ask away- trouble is I don't have many answers. I'll try my best.
Your question about your eyes: The Sjogrens caused me dry irritated eyes but didn't actually affect my vision- except when I tried contacts (impossible!!)
Hang tough! Study-study-study! & write back soon.
Jeri
Lupus 
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