Could this be Lupus?
I have been ill for a while now and searching (with the help of some members of the medical community) for some answers to what is wrong.
What has led me to this Lupus site was a posting from a lady who had severe pain and stiffness in her hands and feet - leading to a Lupus diagnosis.
I have many of the Lupus markers, with the exception of skin manifestations. In addition my ANA was checked twice and both times was negative and Lupus was "off the table" so to speak as a result. All of my blood-work has been normal to date with the exception of a higher than normal range of white blood cell count. There was also an abnormally high amount of Antibodies found in a DNA stool test.
The physical fatigue and muscle/join/tendon pain (I really have a hard time pin pointing the source) is absolutely debilitating. I do have a week here and there were my symptoms are less intense and then it flares up again.
I guess my question is to see if anyone else has had the same type of experience post diagnosis and any advice on what else to try in order to rule out Lupus (or rule in).
Thanks for reading!
Welcome to WHL. In regards to your ANA results, a person can be diagnosed with Systemic Lupus and still have a negative ANA. It's not common, only about 5%-10% of people diagnosed with SLE have a negative ANA at time of diagnosis, but it does happen. Also, the ANA levels are a variable that can fluctuate a significant amount in a relatively short period of time. So, a negative ANA alone does not rule out Lupus.
In regards to skin manifestations, that can vary widely as well. I was diagnosed with SLE in 2004, and I have never had the telltale malar (butterfly) rash on my face. I do get a rash on my feet and thighs, but never once on my face or neck area.
The extreme fatigue and joint/muscle pain are definitely symptoms that you can have with Lupus, but you can have those symptoms with a multitude of other disorders as well. As far as the white cell count and stool DNA, I don't know, as that's outside of my body of knowledge.
Everybody is affected differently by Lupus, and no two people will ever have the exact same set of symptoms or test results. As a result, Lupus can be very hard to diagnose. Have you ever noticed that your fatigue and joint pain flare up and get worse after being out in the sun? Also, do you have any family history of autoimmune disorders?
I wish I had some more definitive answers for you. But, we do have a fairly large base of knowledge here, so lets see what some of our other members think. We'll do whatever we can to help you find the answers you need.
Last edited by rob; 04-13-2011 at 12:03 PM.
Hi and welcome to WHL! I am really not the person to discuss Drs, test results and diagnosing Lupus or other autoimmune diseases. In my opinion too many in the medical community do not understand how to diagnose this disease and therefore too many remain undiagnosed. Rob is correct in that it is rare for someone to get a diagnosis of Lupus when the ANA is negative. He is also correct in that only 5 to 10% of DIAGNOSED cases of Lupus are ANA Negative (Rob knows I am not arguing with him. He is one of my heros. This topic just gets me fired up). I personally believe the number of Lupus cases that are ANA Negative Lupus cases may be higher but those people are ignored by the medical community. I was ANA positive during my first two tests but then mine went to ANA negative due to the medication that I am on. The fact that your doctor took Lupus "off the table" due to the ANA shows that he is one of the doctors that really doesn't understand how to diagnose this disease.
Now back to your original question. "can this be lupus" is a hard question to answer. As Rob mentioned no two lupus patients suffer the same symptoms. Joint, muscle, tendon pain can be many things. Fibromyalgia and Lupus just being two of them. I too would like to know how you handle the sun. Even if it doesn't cause rashes have you noticed any effects on how the sun makes you feel (either that day or days after).
I really don't have anything more to add to Rob's response but I want to welcome you to WHL. This site is not simply for people with Lupus. It is for people who have Lupus or any other Autoimmune disease, people who fighting for a diagnoses or for people who are simply trying to figure out what is happening with their body. You definitely fit in that category so make yourself at home and hopefully others will be along with better info than I have
Success is not final, failure is not fatal: it is the courage to continue that counts.
For the record, I also believe that the percentage of people with Lupus who have a negative ANA result is much higher than the reported five to ten percent. Perhaps one day we'll have more definitive diagnostic methods and as a result, more accurate statistics.
The Following User Says Thank You to rob For This Useful Post:
Hi, and thanks so much for the quick response to my thread. It is just after midnight and I am up because my arms hurt so bad again that I cannot sleep. Good times! lol
You have both raised some good points and I really think that Lupus should be back on the table and investigated further. Particularly the flare up symptoms of the disease hit home for me. The fatigue I have is pretty constant and debilitating, but from a pain and feeling unwell standpoint it varies greatly in severity...like flare ups.
I live in Vancouver (very rainy) so I have not really linked sun exposure to any changes in health. I do however recall having an increase in symptoms during hotter temps, but I don't remember if I was out in the sun during those times.
Perhaps its worth a visit to the tanning salon to see what happens? Not sure if that would be an accurate simulation?
Again, thanks for the welcome and information.
Although I'm hesitant to suggest doing something that could cause harm, going to a tanning booth would be a pretty good simulation. I live in an almost identical climate as you (Searsport, Maine), and it doesn't take much unprotected exposure to the sun to cause me to have a Lupus flare. About 15 minutes in the summer usually does it.
Originally Posted by callctr2000
Basically, exposure to UV radiation will almost without fail cause a person with Lupus to have a flare up of symptoms, usually oppressive fatigue and joint pain are some of the main symptoms that show up. So, if you notice a correlation between UV exposure and your symptoms, that could be a solid clue that gets you closer to an answer.
Also, many people with Lupus, myself included, have a low tolerance for heat. I get overheated quickly, and I don't cool down easily, like my internal thermostat is broken. I will have a flare up of symptoms from this as well.
Are there any other symptoms you have been having? Any mouth sores, or brainfog?
Well if it get's me closer to an answer I am willing to give the tanning booth a try.
I have had ongoing mouth blood blisters on my cheeks that turn into what looks like an ulcer. I should mention that I also have Ulcerative Colitis (mild case it seems) that can also produce the mouth symptoms and in some cases joint symptoms. However this has been ruled out in my case as I do not have a UC flare when I am having other symptoms.
The leg symptoms I have feel like lactic acid pain, as if I just finished running a marathon - except they feel that way all the time. My hands and feet are very sore but feel almost stiff and brittle if that makes sense.
One thing that puzzles me is a prednisone treatment I had in Oct 2010. It was three weeks long and I was excited to see if it would help my symptoms. As far as I am concerned it enhanced them. It was three weeks that I won't soon forget...very painful. Perhaps the dosage wasn't high, or long enough? I 'm not sure.
Okay, I went for a tan yesterday at 10:30 AM and feel just as crappy as before. lol
I do notice an increase in what feels like a bit of nerve burning sensations in my arms. We'll see how the rest of the day goes. It is nice and sunny here today for a change...so I may have a little walk.
Thanks again for all your help...see if I can figure this "sick" think out.
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