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View Full Version : Need input - not sure I have lupus but have lots of symptoms



maggie2
08-17-2010, 03:49 PM
Hi everyone,

I'm new here and can't say how glad I am to have found this board. I'm having some challenges and my doctor thought I might have lupus. She sent me for blood work that came back negative. However, it did not provide any numbers so I could see what level I was at. Many blood tests give a range of where they consider 'normal' and then give your exact numbers from the test. This test was not like this. So my first question is: Is this the way the test is normally reported? I live in Canada if that would make any difference.

When my doctor first started to think I might have lupus was in springtime. I was having a huge problem with a rash on my arms, hands, neck, back, chest and face. It started on my hands and spread all over the place. We tried all kinds of cortisone type creams, plus other creams all to no avail. No matter what she tried, the rash wouldn't clear up. Sometimes it was unberably itchy and sometimes it wasn't itchy at all...that seemed strange to me. Then after about 3 months, it finally started to clear up on its own.

However, I have had a rash across the bridge of my nose and across my cheeks for about 3 or 4 years now. During this crazy rash incident described above, the rash on my face got much more pronounced. It has calmed down again now, but it is still there and no matter what I try putting on it, it won't go away.

Then after the rash was gone off everywhere but my face I started having aches and pains. In my knees, my hips, my fingertips, and many other places. I especially find my legs and knees are bad. This comes and goes for no rhyme or reason. However, I do find it gets worse as the day goes on, and by mid-afternoon I am really aware of my aching joints and bones.

Then I realized that I've been having these episodes for a long time...maybe 5 or 6 years but I had just put it down to aging (I'm now 61) and maybe a bit of arthritis setting in as it is something that also comes and goes. However, recently when I started to pay more attention, I realized that some of my pains are not related to joints, but in other areas. For example, the other night I had pain right at the base of my fingernails. And today I had trouble writing for a while as I had pain in my thumb. I also get a lot of numbness in my hands and sometimes my feet and I also have had a really strong burning sensation in the bottoms of my feet off and on for some time now.

As for fatigue, I have been suffering from that since 1996. I have tried everything to get rid of it and I did get some help about three years ago. The doctor discovered that I have an underactive thyroid and started me on thyroid medication. That made a big difference for me and I started to have some energy again. However, recently I have been finding my energy is lagging again and I just had my thyroid levels checked and they were in the 'normal' range so I don't think it's my thyroid.

I am somewhat sensitive to the sun and hate heat. My eyes are the thing that is most sensitive when I'm out in bright sunlight, actually. Apart from that I can't say if I have elevated protein or cellular casts in my urine as I don't think that was tested. I also don't know what my blood count is at the moment so I don't know if my white blood count is low.

I am seeing a dermatologist on Thursday about the rash so we'll see what he has to say. After that I will go back by my doctor and probably need to request that she have my urine and blood count checked. Once I have that information I may have a better idea of where I stand.

So my second question, after this long post, is: Can any of you here on the forum relate to this kind of scenario with the rash and the pain? And is there some other way to determine lupus besides the ANA test. I certainly fit the profile for 4 of the items on the lupus diagnostic list.

So my final question is: What advice do you have for me for going forward in dealing with this situation?

Any and all feedback would be really helpful and I thank you in advance for your comments.

Marg

Saysusie
08-17-2010, 05:10 PM
Hi Marg;
First, let me welcome you to our family. You will find that almost everyone here can relate to your story. While I cannot say that you do or do not have Lupus, I can certainly say that your symptoms are exactly like those of many of us who do, in fact, have Lupus. Up to and including the pain at the base of your fingernails, the rash on your face, the body rash that itched, your sensitivity to the sun, your fatigue, and your aches and pains!! It does sound as if you are dealing with some sort of auto-immune disorder and there over more than 100 auto-immune disorders.
All of these are symptoms that have been experienced by more than one member here. Also, the fact that your lab tests returned within the "normal" range is a phenomenon that we deal with regularly! Each laboratory has their own gauge for what is normal and it is up to them weather or not they report the values. If you want to know the values, you are within your rights to ask that they be provided to you. Unfortunately, the reporting habits of the labs that we deal with are as varied as the disease itself. So, there is no normal when talking about how lab results are reported.
You should know that it is very difficult to diagnose Lupus (or any auto-immune disorders, for that matter) and some of us have had to wait as long as a year for a definite diagnosis. The symptoms of Lupus can come and go, they can be mild or severe and many patients go through years of rashes, extreme fatigue, painful or swollen joints and fevers without ever getting an accurate diagnosis!
No single test can determine whether you lupus, but several laboratory tests may help the doctor to confirm a diagnosis of lupus or rule out other causes for your symptoms and these tests may need to be run several times over a period of weeks, months, or years.

The most useful tests identify certain autoantibodies often present in the blood of people with lupus. For example, the antinuclear antibody (ANA) test is commonly used to look for autoantibodies that react against components of the nucleus, or “command center,” of the body’s cells. Most people with lupus test positive for ANA; however, there are a number of other causes of a positive ANA besides lupus, including infections and other autoimmune diseases, and occasionally it is found in healthy people. The ANA test simply provides another clue for the doctor to consider in making a diagnosis. In addition, there are blood tests for individual types of autoantibodies that are more specific to people with lupus, although not all people with lupus test positive for these and not all people with these antibodies have lupus. These antibodies include anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and anti-La (SSB). The doctor may use these antibody tests to help make a diagnosis of lupus.
Some tests are used less frequently but may be helpful if the cause of your symptoms remains unclear. The doctor may order a biopsy of your skin or kidneys, if those body systems are affected. Some doctors may order a test for anticardiolipin (or antiphospholipid) antibody. The presence of this antibody may indicate increased risk for blood clotting and increased risk for miscarriage in pregnant women with lupus. Again, all these tests merely serve as tools to give the doctor clues and information in making a diagnosis or ruling out other probable causes. So, as I mentioned, the whole process can take months to a year and, even then, some never get a definite diangosis.
Hopefully, your doctor will provide treatment of your symptoms while you are in this diagnostic process. In the meantime, we are here to help you as much as we can and we want you to know that you are not alone.


Peace and Blessings
Namaste
Saysusie

Hillbillie
08-19-2010, 09:16 PM
Welcome Marg,
I know little of the test needed to diagnose Lupus. I do however have the occasional rash, joint pain, and sinsitivity to sunlight. I WILL NOT go outside unless I have sunglasses on. It gives me a horrible headache if I do. I find I cannot drive at night much either due to being blinded by oncomoing cars lights. My joints give me lots of pain especially my knees. I am fatigued all of the time and am taking medicine for hypothyroid. I'm 51 so I'm right there with you in age. Everyone told me it was arthritis but I said NO way could this be just arthritis. My doctor suspected it and suggested I should go to a rheumy to see if I had Lupus. My Ana was positive but still that is not a definate diagnosis. They gather all types of info to diagnose lupus. Sometimes they do not ever say its Lupus but maybe some other type auto-immune disease. Really its just a wait and see what all the information says. Until then you are at home here. People here will be kind, helpful and understanding. Its a great place to be a part of. Welcome, Billie