View Full Version : Hello To All New Here
04-09-2008, 01:12 PM
Hello to you all,
Im new here to the boards, I havent been diagnosed with Lupus yet but i went to my GP cause i was generally not feeling well, i have been having dizzy spells for 2 weeks and my right arm is hurting alot and feels sore and it kinda just gets a feeling like its"dead" i hope you all know what i mean its just kinda there...Well when i went the doctor says im losing strength in it but she ran lots of lab work...My mom passed away from Lupus and sclorderma, and she had osteoarthritis, my sister also has Lupus...Well everything was fine on my blood work but an ANA test shows positive for Lupus she says it doesnt mean i have it but its a strong possibility....My score was 1:160 not sure what that means?...Also i have to go to a Rheumy and my first appt is at the end of the month...Im not sure what to expect at this appt can anyone tell me what to expect...Also i dont think i have any other symptoms, no rash, i do have arthritis in my fingers and i have numbness in my fingertips and recently my toes, and my right arm hurting is about it...I seem to get tired alot these days and feel like a need a nap during the day to make it....Also one last thing i have something with my bladder or kidneys i seem to have some pain when i have to pee its been coming and going alot this year so i drink alot of cranberry juice....Does this sound like Lupus and can anyone help and tell me what you all think...Thanks in advance for your replies...
GOD Bless you all
04-09-2008, 02:38 PM
It may or may not be Lupus. Lupus has many faces affecting the body and organs.
What to expect at your first appointment. Physical exam of your strength, fingers, hands, thighs..calves.. reflexes, pressure points. Questions about how you feel, your symptoms...how long has it been going on...
What I would suggest is to prepare yourself for your appointment with the Rheumatologist is to list all unusual symptoms you have, be it huge or small. Small things can be important. Any previous lab work. Bring a copy of lab work from other doctors..
Ask questions...never feel like your questions are irrelevant or stupid...
And if possible bring someone with, so they can be a second ear...
Keep searching for your wellness..
04-09-2008, 02:52 PM
Just wanted to add my welcome. You can learn more about the ANA at Lab Tests Online
A positive ANA is not by itself diagnostic for lupus. It may be an indicator of some autoimmune process, or it just may be that you are one of the healthy people who has a positive ANA. This can and does happen.
Oluwa has offered you some great advice as far as the rheumy appointment goes. It helped me to keep a journal of symptoms, dates of onset, duration, etc. The fatigue and joint pain can leave you feeling so tired and overwhelmed that you forget to mention the small things (as Oluwa stated) that may turn out to be really important. The process of diagnosis for lupus can be a long and frustrating journey, as the clinical criteria necessary to confirm the diagnosis may not present at the same time. However, a confirmation of these criteria one at a time, over time, may confirm or rule out the diagnosis. So, the journal can be helpful for both you and your rheumy.
Sorry to hear about your mother and sister. I wish you well in this journey. I hope you find comfort in this forum.
04-09-2008, 03:16 PM
Thank you both for your replies i did check out the link and it was very very helpful....Im really nervous and a bit scared of the possibility of having this disease as i had seen what it did to my mother....So i know this site will be a blessing to me and my husband who knows about as much as i do which isnt much.....I also wanted to know if anyone else felt at times confused and just felt weird like you didnt know or forgot where you were? I have had this also ...Also one last question? At times i feel as if my heartbeat is fluttering it wakes me up at night even and i feel as if i ran a marathon cause its beating so fast has this symptom ever happened to anyone else? And lastly should i tell my doctor this at my first appt?
God Bless you all
04-09-2008, 03:22 PM
Just wanted to add my welcome to the mix. You have been given excellent advice and I cannot add anything further to what you've already received. However, you asked about the 1:160 in your ANA. So, I will give you a brief explanation about what that means.
There is no single diagnostic test for lupus. There is a screening test called the ANA (anti-nuclear antibody) test which is often checked when a doctor suspects lupus. If the ANA test comes back negative it is considered a normal result, and it is very good evidence against lupus as an explanation for the symptoms. If the ANA test result comes back above the normal range, the test is said to be positive. A positive ANA test by itself is not proof of lupus.There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease.A positive ANA is only an indicator which points in several possible directions, and indicates that further investigation and analysis may be needed.
The doctor will view your ANA and other lab results, taking into consideration your history and a physical exam to determine if there is sufficient evidence to diagnose Lupus or any specific illness. None of the connective tissue (joints, tendons, cartilage, collagen, muscles and skin) diseases have a specific diagnostic tests. Diagnosing these illnesses is based on meeting certain criteria for the disease which are based on the symptoms you have had, your physical examination, and your blood tests. In systemic lupus, eleven criteria were developed for research purposes but are frequently used to diagnose lupus (those criteria are listed in "Newly Diagnosed".
More than 95% of people with systemic lupus have a positive ANA. Only a small percentage have a negative ANA, and many of those have other antibodies (such as anti-phospholipid antibodies, anti-Ro, anti-SSA) or their ANA converted from positive to negative from steroids, cytotoxic medications, or uremia (kidney failure).
Your number 1:160 indicates your titer in the ANA test. A titre (ti-ter) is the number of times a solution (such as your blood) can be diluted before a substance (an ANA antibody) can no longer be detected. Thus, an ANA titre of 1:80 means that the blood can be diluted to one in eighty parts and the lab technician can still detect the ANA antibody. The dilutions are usually two-fold, so that the next dilution would be 1:160, and the one after 1:320. Because normal ranges for ANA titres vary from lab to lab, there is no universal normal range. There is no limit to how high the ANA can go. However, 1:160 is almost always considered high.
If yourserum (blood) contains antinuclear antibodies (ANA), they bind to the cells (specifically the nuclei of the cells) on the slide used by lab techs. A second antibody, commercially tagged with a fluorescent dye, is added to the mix of your serum and commercially prepared cells on the slide. The second (fluorescent) antibody attaches to the serum antibodies and cells which have bound together. When viewed under an ultraviolet microscope, antinuclear antibodies appear as fluorescent cells.
If fluorescent cells are observed, the ANA (antinuclear antibody) test is considered positive. If fluorescent cells are not observed, the ANA (antinuclear antibody) test is considered negative.
A titer is determined by repeating the positive test with serial dilutions until the test yields a negative result. The last dilution which yields a positive result (flourescence) is the titer which gets reported, in your case, this was 1:160.
I hope that I've answered your question. Welcome to our family and please do not hesitate to ask any questions that you may have. Someone here will always do all that they can to help you.
Peace and Blessings
04-10-2008, 07:33 AM
Thank you SaySusie that was awesome to read you all have made me feel very welcome i guess not all i can do is wait on my appointment and see what happens i will keep in touch and give you all updates....
God Bless you All
04-11-2008, 10:49 AM
You are most welcome :lol:
04-11-2008, 10:54 AM
One more question i feel as if im being a bother but how long does a flare up usually last? Some days i feel so drained and cant barely walk but then the next day i feel so much better, could this be a flare up or what? Thanks in advance
God Bless You All
04-11-2008, 11:16 AM
A bother...no never. If that was the case, we would all be called bothersome..Saysusie created this place for everyone to feel safe, to be understood. No one, nor any question is bothersome...
Flare duration? A day, a month, year...no one is the same...seems bleak, but just care for yourself
Sometimes I feel like mine changes by the hour. Just keep doing your preventive care...follow doctors orders, avoid sun, SPF, eat healthy, sleep, exercise with care ..keep stress manageable. and etc.
Eat for your health and not your taste buds as much as possible. I fall and toss a Hersheys' Chocolate Plain in every once in a while...and a bit of greasy chicken...
First of all, welcome! This site has some of the best info you will find anywhere, and the people here have understanding and empathy beyond compare. In my opinion after reading your post, I does sound like Lupus. Given your symptoms and family history, it is quite possible that it is Lupus. Lupus can be quite mysterious though, your rheumotologist can help get the bottom of your symptoms and help identify what's happening to you. Lupus symptoms, as you probably have read, can vary widely, and be very different from person to person. Flares for me are almost like clockwork. They happen to me at least once every week, and last about 3 days. But others have very few flares, and they can be mild. Yet some of us seem to have an almost constant flare. It's all so different. Oluwa has brought up some very important things. Make a list. Take someone with you to your appt if possible. Definitely ask questions. I believe you are your own best advocate. You live in your body, and you know when there is something wrong. A diagnosis can be very elusive, so persistence on your part is very important. Lupus can be manageable, and many people lead a happy productive life with it. It can also be serious, as I'm sure you are aware of. I'm so sorry you lost your Mother. You are certainly not a bother here. Questions, venting, and sharing your concerns and fears are very much encouraged here. Once again, welcome!
sick n tired
04-13-2008, 12:03 AM
Welcome to this forum....you are not a bother...if you have a question, then ask away. :)
I also am having much pain in the right arm and I know what you are saying about it feeling dead...for me I just can't use it...
Some people have short flares and others have longer ones...this seems to be an individual illness....we have some similar symptoms, but react differently at times....
I look forward to getting to know you better.,
04-13-2008, 01:35 AM
:) welcome strengthnme
I had three months break from a flare, but it seems to be back. I'm on week two of a flare, not sure how long it will last.
04-13-2008, 03:14 PM
I am also fairly new here. At age 35 my specialist told me I had an autoimmune disease but I was too busy working, going to school, taking care of a home and a child by myself to be intimidated by a disease. I did not know what he was talking about. Thankfully, I followed the doctors recommendations, isolated myself from other people and their germs, for a while, took the med and shots and then when into remission until age 47. At age 35,when first diagnosed, my doctor thought that I would have to retire from my occupation. I got better and as far as I was concerned, I was cured from "whatever" and thankful to that doctor. Well, It is back. I am hoping I can go back into full remission, but am thankful I had all those years symptom free. So, I guess autoimmune diseases are hard to predict. We can only hope that remission is around the corner and it will stick.
I know I am not in full remission now, but feel better than I did 6 months ago. Once I accepted what was going on in my body and went back to the right doctor who prescribed me meds that reduced all the symptom, there are more "good" days than "bad"
I hope you get the best treatment and feel better soon, for longer durations
My best wishes,
04-13-2008, 06:02 PM
possibly you have lupus my arms got dead everynight and my fingers cramped up especially when i am in a cold environment.my shouldres were also swollen and i could not even lift up my son or comb my hair.with the urine mayb there is protein in ur urine and mayb ur kidneys are being affected. I am on OMEGA 3 FISH OIL and it has done wonders for me it was prescrbed to me by my rhematologist. u can try it
05-21-2008, 07:19 PM
Did you get lost in the change, when the site went down. I am hoping you have your thread tagged with an email reply when someone replies...it is me..
The end of April came and gone, how was your month end appointment? Did you get your questions answered? I hope so, and you are on you way to feeling better..
We're thinking of you..hope to see you soon..