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Hi there! I've a few questions if you don't mind?

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Posted 2/20/2008 2:41 PM (GMT 0)
I usually hang out on the Uc forum but I've suspected Lupus for quite a few years now but no testing has ever confirmed it.  So I have a couple of questions, I hope you all don't mind?  :-)

I won't get into my history just yet because I don't want jaded answers.  scool   So here goes:

1) What sort of symptoms were you having to lead you to the doctor in the first place?

2) Did your early symptoms pop up randomly and then disappear - never consistant?

3) Did you have a blood test that confirmed it or no?

4) Do you have other auto immune diseases in which the symptoms can overlap on the Lupus?  Confusing you because you don't know what is coming from where? I'm talking early diagnosis of Lupus or possible Lupus.

5) Does your Lupus attack your joints? And if so, is the pain consistant or random? Swelling involved or just pain?

I want to thank anyone for taking the time in answering my questions!  :-)

Posted 2/20/2008 4:02 PM (GMT 0)
Mine was comfirmed from my blood work but I have had symptoms for years. Yes my joints hurt but I also have RA and OA so I don't know witch to blame for the pain Lupus or Ra but my joints do swell also. Hope this helps, Linda
Posted 2/20/2008 4:14 PM (GMT 0)
My initial dx was pretty simple -- I'd been complaining of fatigue during my annual physical for about 3 yrs, when at a physical my PCP decided to run an extra blood test (don't know what test she ran). This might have been prompted by my additional symptom - my legs and one foot would go numb when I was running. (I ran about 20 miles a week then.) She came back and said, you might have lupus, and gave me the name of a rheumy. After he asked an hour & a half worth of questions & did some blood work, he declared it lupus and started treating me. Joint pain is both consistent and random -- there are certain joints much more likely to give me trouble - right hand, then right foot, then left hand, then left foot. But the joint of the week and the level of problem is very random. No swelling, just feels like someone has poured boiling oil deep into the joint. Check some of the links in my signature to find out how to dx lupus (4 of 11) as well as other pertinent lupus info. I hope you find some relief, even if you don't find a dx! Lots of us here are being treated "as if" and find our symptoms being relieved, without a dx. Some find it better for insurance reasons not to have lupus in their records. Cheers,
Posted 2/20/2008 5:07 PM (GMT 0)
Thanks Lynnwood and mawmaw for your answers. I'm quite familiar with the Lupus.org website but thank you :) As for the symptoms of Lupus, I have many of them however some of them can be explained by my Uc as well so that is where I get confused. I have never been to a rheumy yet and I was offhandedly diagnosed with fibro though I question that diagnosis since I don't fit some of the criteria.

I know that Lupus can be hard to diagnose, especially in the early stages. So by the time the signs are very evident, can it damage things in the body that is irreversible?

Here are the symptoms I have been getting - but some of them aren't consistant so that is why I was wondering if the symptoms are consistant or intermetient (sp?). By the way, I took this list off the lupus website.

Achy joints - yes - with Uc, joint pain is common but I'm in remission from my Uc in which the joint pain should be minimal but it's not
Fever - yes, sometimes its very low grade though
Arthritis / swollen joints - yes to arthritis but it's minimal in my lower spine
Prolonged or extreme fatigue - yes, but once again it can be because of Uc and the meds that I take
Skin Rashes - a resounding yes! I have been having rashes off and on for a while and I even had the butterfly rash last year a couple times but since then, it hasn't come back.
Anemia - yes but I believe that is due to my Uc
Kidney Involvement - no
Pain in the chest on deep breathing / pleurisy - sort of, I've been diagnosed with pleurisy when I was 4 and have sporadic bouts of this
Butterfly-shaped rash across the cheeks and nose - see above
Sun or light sensitivity / photosensitivity - my eyes are sensitive to light due to having German Measles as a child but sunlight and heat - I am sensitive too and feel achy, feverish and faint
Hair loss - no
Abnormal blood clotting problems - no
Raynaud's phenomenon / fingers turning white and/or blue in the cold - yes and I think right now that is my biggest problem mainly because it's been cold out
Seizures - no but I do have fine tremors in my right arm
Mouth or nose ulcers - yes, I've had nose sores off and on last year

In addition to the above, I also have Sacroiilitis and nerve damage on the right side of my body.

I have been tested numerous times for Lupus, though I don't know which test my doc used. And trust me, I DON'T want a Lupus diagnosis, nor do I think any of you do either. I just want a name to my demons if you know what I mean?
Posted 2/20/2008 6:32 PM (GMT 0)
Most of us here agree that only a rheumy who works regularly with lupus is qualified to give a lupus dx. As you've found, it's an elusive disease that presents differently for each individual. A fair number of us have overlapping dx and/or overlapping symptoms -- no absolutes when dealing w/autoimmune diseases, it seems. Cheers,
Posted 3/1/2008 9:03 PM (GMT 0)
Hi Red . . .I've been away for a while, but saw your post. I agree with Lynwood's responses. AND many of us are treated for lupus w/o an official dx. Me included. I 'think' your malar rash, nose ulcers, and plueresy are more characteristic of lupus than UC . . . but I don't know that much about UC. You certainly have many of the symptoms for lupus. When your doctor does the ANA test . . . are you positive??? If yes, find out what the patter is. There is a post in "Lupus Resources" which discusses the different patterns and what they suggest. If you get a rash or nose/mouth sores and are able to get pictures. . . make sure you do so and bring the pics to the rheumy with you. Keep us posted!! I know what you mean about wanting to know exactly what you are dealing with. I see the Gastro on Monday and have been doing better in that department. Blessings!
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