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How were you Diagnosed?

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Lupus
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Posted 1/31/2010 8:32 PM (GMT 0)
Hi,

How were each of you diagnosed?

THX!!

Posted 1/31/2010 9:41 PM (GMT 0)
Hi Confused, I kind of got a chuckel out of your questions. I know there are a lot of things you want to know. Just like everyone when they first get here. You could probably have asked them all in the same post though. Not that it's a big deal either way though. I'm not feeling well today so I am not jumping iin with some answers but I am sure others will have them for you/ I just wanted you to know that sunday is typically a slow day around here. I'm sure people will respond tonight or in the morning.

A lot of us have never been diagnosed. We are taking meds that seem to help us out but we oficial don't have a DX. It's just that many auto immune diseases are treated with the same type of drugs. In many cases the symptoms get treated long before the disease.

hugs

carol

Posted 1/31/2010 10:21 PM (GMT 0)
I had joint pain and 3 of my grandparent have/had RA so I went straight to a rhuematologist and he listened to me, examined my joints and then did blood work. When I went back for my follow-up appointment I was told I had Lupus and he gave me a brochure to read. He said I had book work lupus with flying colors. I didn't believe him (and didnt like him) so after a year I found a new rhuemy who ran more tests and said I had bookwork lupus as well. I still had trouble believeing that I had lupus but really liked this rhuemy so I kept going to her. Then Jan of last year I had kidney involvment from lupus and I finally realized that I truly did have Lupus.
Posted 1/31/2010 10:24 PM (GMT 0)
Hi Okie,

Thx for taking time to reply.

I kinda thought about the postings after, LOL! You are probably right. I apologize........

Im so desperate for answers, so my mind is all over the place!

I hope I recieve responses & TY.  :-)

Posted 1/31/2010 10:49 PM (GMT 0)
Thank you Aimsgrl!

Sorry,  I can understand your disbelief.

May I ask you, what happens when you have kidney involvement?

Does it get better? Is it treatable?  Is it true that those who test possitive for anti DNA are more likely to have renal involvement?

I hope you are doing well today & no longer have kidney involvement! :-)

Thx for answering my questions,

Rachel

 

Posted 1/31/2010 11:06 PM (GMT 0)
Hi Rachel! Most of the time when you have kidney involvment you are not aware except that a urinalysis and blood work will show your kidneys are functioning to what they should be. If you do have symptoms, it is usually swelling of the feet, legs, eyes, and sometimes in your hands. You might also notice coke colored urine or really foamy urine. You will have protien and blood in your urine and normal urine would have very little to none and your function can decrease to the point of needing Dialysis. It is very treatable, usually by CellCept, Imuran, or Cytoxan and it, like lupus, can lay low and have no symptoms for months to years. Just depends on how your body handles Lupus!

In my research, if you have a positive anti DNA, you are more prone to have renal involvement, which is usually diagnosed within the 5 years of your lupus diagnosis. But everyone is different and you can't really predict anything with Lupus!
Posted 2/1/2010 12:29 AM (GMT 0)
I was just diagnosed this past November. In September I started getting really bad joint pain in my hands and wrists so I visited my doc. Arthritis runs in my family so that's all we thought it was until my ANA came back positive but my RA tests were negative. He ran more tests and I had a positive anti DNA, protein in my urine, as well as a few other things that he said looked like lupus. In November I got in to see a rheumy who gave me the diagnosis. I guess I'm lucky since I knew within 6 weeks of my joint pains what I had, but now it's a waiting game to see what else goes wrong :( Ive also suffered from terrible fatigue the last few years but never knew it was from lupus.
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