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Is it Lupus?
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Is it Lupus?

   I have had problems with my joints since my early teen years (I'm 36 now, male). Played baseball from little league through the 15yr old Babe Ruth league as a catcher. I was diagnosed with "osteochondritis" of the knees at around age 13. I have bad feet they tell me are collapsing, also with severe "hallux vulgus" (bunions). During my early teen and pre-teen years I sprained my ankles a lot, several times required using crutches. During my early teens, and continuing now, I have severe stomach cramps that bring me to the floor. Most of the time the stomach pain comes fast and hard, and usually only lasts about 30min. Most all the time I have diahrea but occasionally constipation, very seldom normal. I have seen many Dr.'s about this but no diagnosis. I've been told IBS, nerves, others simply say "I don't know".
   Back to the joints! I have performed residential custom home carpentry for 10-15 years which included concrete, framing, plumbing, roofing, etc. My wrists began getting "ganglion sists" in them which to me is very painful, more painful than hitting my finger with a hammer. Now my wrist will fail at the smallest of exertions. I might be able to hammer all day without a problem, but get a cup of coffee out of the microwave and almost drop it for pain and lack of strength. This happens sometimes now even when a ganglion isn't present. Several finger joints bother me frequently, and come and go in different fingers with no paticular reason or injury. I recently had a shoulder MRI of right shoulder and they said I have shoulder impingement syndrome. I'm also getting headaches that feel as if they start in my neck and end up in the back of my head, at the base of my skull.
   I have had several cortisone shots in my wrists and knees. I've had bursitis in my knees as well requiring fluid to be drained. I recently went to the local Health Dept. (no insurance) and asked if they would do bloodwork for arthritis. When I went back for my results it was to my surprise they said I had no arthritis, except for osteoarthritis. They said "what is causing you problems is SLE, Systemic Lupus Erythemotosis." My ANA test was pos abnormal. However, my sedimentation rate was normal, uric acid was normal. I went to a couple of other places to get confirmation but they couldn't (or wouldn't) say for sure. I went back to Health Dept. for more tests, they said we don't need to run any more tests, we're absolutely positive that is what's wrong with you! I eventually went to a rhumatologist and had more tests done. ANA was still pos abnormal, everything except B vitamins were normal he said, just low on B. This Dr. also ran double stranded DNA test, tested for sjourns syndrome, hepatitis and some others more specific tests. My question is, is it really Lupus? The articles I've read say there is no one test for Lupus. However, RA has been eliminated as well as the others mentioned above. I just don't know what to do. The Health Dept. said they can do the bloodwork & diagnose, but don't have the means to treat Lupus. Does anyone have any better information that might help me figure out where to go or what to do next???
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483733_tn?1326802046
It is good to have Lyme ruled out as it is often missed.  I have lupus that plays hide and seek in my bloodwork in addition to fibromyalgia.  I take Plaquenil and lyrica.  I would go back to the rheumatologist you saw and tell him he needs to treat you for something.  In my case my rheumatologist put me on the Plaquenil and since it helped it made him be closer to a diagnosis. Don't let yourself go untreated.  Demand answers and possibly go for a 2nd opinion.
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1193998_tn?1265121197
It not uncommon to have all the physical symptoms of an autoimmune disease like rheumatoid arthritis or its cousin, lupus, and have nothing show up in bloodwork. It's called being "sero-negative". A blood test is only one tool, not the definitive yes/no. You need to be seen by a rheumatologist, who specializes in diagnosing and treating these types of autoimmune disorders. If the health dept. doesn't have a rheumie on staff, it's no wonder they say they're not equipped - they're not!  Whatever you have, it's too complex and involves too much trial-and-error to find the right treatment for them to tackle. Nor should they - you need a specialist.
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1193998_tn?1265121197
I forgot to add that I have RA, not lupus, but from what I understand, lupus affects the internal organs as well as or instead of the joint tissue. It doesn't seem logical that they'd dx you with lupus if joints are your main problem.
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1477978_tn?1289505731
Thank you for your reply, any info I can get is very helpful at this point. I had gone to a rhumatologist but still no difinitive answer. As I said the 1st & 2nd ANA was positive abnormal (health dept, rhumatologist). Negative for RA. The rhum. also ran ds-DNA, Smith antibody, IgG, and a few others (about 12 total, have to get out my paper to rem. the rest) The notes from rhumatologist said he suspected multijoint arthralgia or inflamatory spondyloarthropy, but still wouldn't rule out lupus yet. I've not had the money to get any x-rays yet, no insurance either. I've had a few other reoccuring problems besides joints, such as the severe stomach cramping, some bad headaches started about a year ago, can't tolerate the cold (lupus usually can't tolerate the sun to my understanding). The health dept. thought that when I would have an osteoarthritis flare it was causing the immune system to overreact (because of SLE they said) and start attacking good and bad cells around wherever I was having a flare and causing it to be worse. However, I don't get the butterfly rash, skin rashes etc. but I also didn't mention the severe fatigue. The fatigue is probably worse than the joint pain usless it's at the time of a flare up, then the joint pain IS the worst of my symptoms. Some other symptoms I missed above are; twitching muscles (various places), I don't heal well (always getting a tooth pulled takes months to heal, even if they stitch up the socket), insect bites take an unusually long time to heal no matter how much I care for it, will sometimes even cause scarring. I couldn't find any good information on the arthralgia or spondyloarthropy. Best I can tell, it's just painful joints? Have you heard of these? How about Lyme Disease, could this have the same symptoms? Or you think they would have tested for that already? Do you know what the name of the test is for Lyme? Thank you so much for your input!
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483733_tn?1326802046
It is good to have Lyme ruled out as it is often missed.  I have lupus that plays hide and seek in my bloodwork in addition to fibromyalgia.  I take Plaquenil and lyrica.  I would go back to the rheumatologist you saw and tell him he needs to treat you for something.  In my case my rheumatologist put me on the Plaquenil and since it helped it made him be closer to a diagnosis. Don't let yourself go untreated.  Demand answers and possibly go for a 2nd opinion.
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