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

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New Member

Date Joined Feb 2010
Total Posts : 12
   Posted 2/6/2010 5:02 PM (GMT -6)   
Was it a general practice doctor or a specialist who figured it out?
Just curious.
Searching for a diagnosis,

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 2/6/2010 6:37 PM (GMT -6)   
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!!!

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 2/6/2010 8:14 PM (GMT -6)   
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,

Regular Member

Date Joined Jan 2010
Total Posts : 42
   Posted 2/6/2010 8:46 PM (GMT -6)   
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.

Regular Member

Date Joined Oct 2007
Total Posts : 184
   Posted 2/6/2010 9:40 PM (GMT -6)   
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....

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Date Joined Sep 2005
Total Posts : 2573
   Posted 2/7/2010 5:45 AM (GMT -6)   
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

Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

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Date Joined May 2005
Total Posts : 6923
   Posted 2/7/2010 11:56 AM (GMT -6)   
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.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 2/8/2010 10:41 PM (GMT -6)   
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.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 2/8/2010 11:50 PM (GMT -6)   
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.
again welcome tothe group

systemic sclerosis,scleroderma,sleep apnea, anemia, COPD

 But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 2/9/2010 12:39 AM (GMT -6)   
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!
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

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