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How long did you have Lupus before you got the correct diagnosis?

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Posted 2/6/2010 10:02 PM (GMT 0)
Was it a general practice doctor or a specialist who figured it out?

Just curious.

Searching for a diagnosis,

Cass

Posted 2/6/2010 11:37 PM (GMT 0)
Specialist, I went striaght to a rhuematologist a few months after I started having joint pain and was diagnosed by my second visit! I have "book work" lupus but most people go months to years!!!
Posted 2/7/2010 1:14 AM (GMT 0)
Rheumatologist.
Posted 2/7/2010 1:46 AM (GMT 0)
I went to my general practitioner for joint pain, just thinking it was arthritis. He did some blood work and suspected lupus, so he sent me to a rheumy who confirmed it.

Posted 2/7/2010 2:40 AM (GMT 0)
I had been going to a Rheum.. for 2 years... then moved to another town and started going to another Rheum.. He dx me that day....
Posted 2/7/2010 10:45 AM (GMT 0)
It took me almost 15 years to get a dx and I saw many doctors, I got lucky in the doctor I picked as my last attempt to get someone to listen, had she said nothing was wrong with me I was planning to give up and let whatever was wrong kill me. Instead of saying nothing was wrong she dxed lupus on my first visit based on pictures, medical history, and visable signs BTW this miracle of a doctor was a lupus specialist Rheumy
Posted 2/7/2010 4:56 PM (GMT 0)
Complained for 2-3 years at annual physical of increasing fatigue. Tested for anemia, regular stuff. At 3rd year some joint/muscle pain begin, GP tested ANA which was slightly elevated, referred to rheumatologist who tentatively dx lupus & got treatment at first visit. By how my body/labs reacted, dx for sure at 2ond visit.

So, for me, I guess just a few months after multiple symptoms appeared.
Posted 2/9/2010 3:41 AM (GMT 0)
I had Lupus for 13 years before a dx. Actually, a Dermatologist suspected it from a skin biopsy and a family physician confirmed it, then I was referred to a rheumatologist.
Posted 2/9/2010 4:50 AM (GMT 0)
Hi Cass, I havn't welcomed you to the group. I'm carol. To be perfectly honest with ya I am not now nor will I ever be completely convinced that anyone knows exactly 100% sure what is wrong with me.

You know I thinkwe are all kind of getting a raw end of the deal. There havn't been enough famous people or outcrying to make the scientific community really serch for answers. Yes it used to be an automatic death sentenced for the majority of lupies so now you won't ness. die but your quality of life is not what is should be. At least in my humble opinion. I actually saw a commercial last week about a lady who was talking about her symptoms and she ask "could this be Lupus"? I all most fell on the floor.

anyway

again welcome tothe group

carol 

Posted 2/9/2010 5:39 AM (GMT 0)

labrat72 said...
Was it a general practice doctor or a specialist who figured it out?

Welcome to the forum Cass! :)

Carol (aka okie) has it right....there's not enough research being done and doctors seem confused by the variety of faces that lupus can wear.

I know it took a while (a few years on average) for my relatives with lupus to be diagnosed. I have a number of cousins with lupus, two of my aunts died of lupus nephritis, and one of my daughters has SCLE as well.

I've been through several doctors as I've been dx with my many autoimmune diseases....I'm on my second primary care Internist and my third rheumy in the past three years.

My current rheumy (#3) dx me with SLE last October. But then in December he told me that he doesn't think I have lupus after all!! LOL!!

I guess I wouldn't mind him UN-diagnosing me if he would just explain why. But he didn't bother to explain. So I'm going to see rheumy #4 next month, just for another opinion. She's supposed to be a lupus expert, while my current rheumy is a fibro guy (I have fibro too).

So I'm still in the process of being diagnosed, I guess! tongue

Good luck to you! I hope you get some answers soon!
JoAnn
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