Question about Lupus?

I posted a lengthy post in the Arthritis section about Lupus before I noticed this particular section dedicated to lupus. Could anyone with time on their hands take a look at it so I don't have to re-post here? Thanks for your time!

[karajo]

Adam, I copied and pasted you post so others could see it. Kara

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???

[karajo]

Doctors take in consideration your symptoms as well as lab results to dx lupus.  And most of us are on plaquinel, which has a generic form.  It is relatively inexpensive and makes a huge difference.  

There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to recieve a dx.

They are:
1. malar rash over cheeks (butterfly rash)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and nose ulcers
5. arthritis
6. serositis - inflamation (inflammation) of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
fever
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out
fatigue
muscle pain and weakness
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
...to name a few

Keep in mind that fibromyalgia, CFS, MS and lymes disease also have similar symptoms.  

How many of the 1 criteria do you have?

[PolyGirl]

Is it possible to be diagnosed with Lupus almost 20 years ago and not have a flare up in the past 15 years and living pretty healthy until recently? I admit that I have been in & out of the hospital for kidney stones, kidney infections, bladder infection, uterus infection, diverticolitis, high blood pressure, anxiety, insomnia, etc in the past 3 years but I didn't want to even mention Lupus to my doctors or family and have to face up to it all over again! My Dr diagnosed me with Fibromylasia/Lupus but chose to treat me for the Fibromylasia to get me out of severe pain that is like someone taking a knife and slicing me from my toes, inside my legs and all the way to my chest and sometimes up to my head!

He put me on Savilla for 6 months, xanax & sleeping pill and it started to work enough for me to at least function but in the past month, I been suffering with what I remember as Lupus flare ups and my Dr suggest me to go to a Rheumotologist to get treated immediately. I have been avoiding going and having a hard time even thinking straight along with my eyes so puffy I have to keep resting them when I can. I am so depressed and literally having bad chest pain that makes me afraid I may have a heart attack in my sleep, my body feels so swollen and hurts everywhere and I can barely get out of bed! I don't want to go back on the steriods and strong pain meds and I am tired of going to ER and put on antibiotics. Is there any way to avoid this? Can this be something that will just go away or is it going to get worse now that I am in my 40's?? I don't know what to do? Can anyone help me?

[karajo]

Hi Poly,
Your dr. is right, you need to be seen by a rheumatologist to get checked out.  If you do indeed have lupus, you could have something as serious as endocarditis.  Chest pains should never be ignored.  And w/ high blood pressure and anxiety, all the more reasons.  And if something as simple as predinose would help, I think you should go for it.  

Are you still taking the savilla and zanax?  Not too many people could say they got better like you did.  That is wonderful!

Keep us posted
Praying for ya, ~Kara