Who here has Lupus?

Mermaid02

DIS Legend
Joined
Apr 1, 2002
Messages
20,558
I'm seeing the rheumatologist on the 20th but I was just wondering who here has been diagnosed and what were your early symptoms? I really think I might have this.
 
I was diagnosed last month with this-no symptoms at all. I was also diagnosed with Shogrens syndrome. I have ,y appt with the rheumy this coming Friday-they say the initial appointment takes two full hours! I'll let you know how it goes.

Here are some threads that have been started on this topic.

http://www.disboards.com/search.php?searchid=6964440
 
My ENT suspects I might have it. I have a perforated septum and a slightly elevated ANA level. He has referred me to a rheumatologist, but I don't have an appointment yet.

Did you post a list of symptoms the other day and ask for advice? I think I mentioned Lupus. I only thought of it because I have been looking into it, too.

Good luck!

Denae
 
My ENT suspects I might have it. I have a perforated septum and a slightly elevated ANA level. He has referred me to a rheumatologist, but I don't have an appointment yet.

Did you post a list of symptoms the other day and ask for advice? I think I mentioned Lupus. I only thought of it because I have been looking into it, too.

Good luck!

Denae
I posted it a while ago..... joint pain- weight gain- fatigue (extreme at times).... I also have avascular necrosis (this is why I'm having my hip replaced in December) and when I was reading that it mentioned that avascular necrosis has been linked to Lupus........
 

I have lupus. I was officially diagnosed about a year and a half ago, but I had symptoms starting around 2-2 1/2 years ago.

I had really bad joint pain, mostly in my fingers. They were really swollen, and it got to the point that making a fist or even holding a pen was excruicating. And being a college student, not being able to write was not a good plan.
I also had extreme fatigue, usually at its worst around my period.

I got blood work done, and the nurse at the college suggested I see a rheumatologist after the labwork came back, and I managed to get an appointment at Johns Hopkins' rheumatology. At first, they suspected I had RA and possibly lupus, but eventually ruled out RA.

So now, after a year and half being on Plaqueinel, my Lupus is under control. I've only had one flare up, and that was caused by stress (ie, finals week last year was horrible). I still get tired alot, but hey, I'm a college student, I can handle it. :)
 
My sister has Lupus, and she started out with fatigue and joint pain in her hands. I thought I had it last year, but it turned out to be Wegener's granulamatosis, which had many of the same symptoms. I didn't get a diagnosis until my kidneys failed. Finding a good rheumatologist will help get it under control before any problems arise. My sister has been in remission for several years.
 
nmmom95-my sister in law has Wegners-se was diagnosed in 1997 but had been having symptoms for a couple of years before that-she has been in remission for some time but has had a number of surguries for trachial stenosis. Wegners is much more uncommon than lupus i believe-i know several people with lupus-but you are only the third person i have have ever know of to have Wegners ( my sister in law, the brother of an ex-girl friend of one of my sons-who was diagnosed at 12 years old)
 
nmmom95-my sister in law has Wegners-se was diagnosed in 1997 but had been having symptoms for a couple of years before that-she has been in remission for some time but has had a number of surguries for trachial stenosis. Wegners is much more uncommon than lupus i believe-i know several people with lupus-but you are only the third person i have have ever know of to have Wegners ( my sister in law, the brother of an ex-girl friend of one of my sons-who was diagnosed at 12 years old)

Wegener's is pretty rare. I met someone on the DIS whose husband had it, and that it it until now. I'm glad your SIL is doing well. I am also in remission right now, and if I stay ANCA negative until May, I can become active on the transplant list. Keep your fingers crossed!
 
I'm seeing the rheumatologist on the 20th but I was just wondering who here has been diagnosed and what were your early symptoms? I really think I might have this.

Have you checked out www.butyoudontlooksick.com? You will find some great information and meet people who have been through what you're going through.
 





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