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How long did it take you to get diagnosed?

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Old 08-31-2006, 11:34 AM   #1
Join Date: Jun 2005
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CircusSquirrel HB User
How long did it take you to get diagnosed?

So I went to the doc this past Monday, the 28th, and he said it sounded like lupus but he wanted to wait for a whole ton of labs to help him with the diagnosis as it could be another autoimmune disease or "just an odd collection of symptoms". The hospital had to send some of my labs to another facility so I expect my results on Monday (I hate waiting, but don't we all!). The doc did say that diagnosing autoimmune diseases could be tricky and he wasn't promising any definitive answers with the blood tests, but he felt that after the labs come back at least he'd have more info to work with and go from there. I hope they find out what the heck is up with me, I've felt so tired and achey and strange lately. I sure don't want to have a disease, but I would like to feel better! How long did it take you guys to be diagnosed, or if you don't have a diagnosis, how long have docs said "it sort of looks like lupus, but I'm not ready to diagnose."? I've had symptoms on and off for some years and about 5 years ago I had a bad ANA and SED rate test, but my doc didn't feel the other tests warranted sending me to a rheumatologist. Then I had a pulmonary embolism on birth control pills, found out I had the lupus anticoagulant, and was on blood thinners for a while, all the time the joint pain/fatigue/weird sun reactions would come and go (my recent tests for lupus anticoagulant have returned negative---yay! Hope it stays away.). The past two or three months are the longest that the symptoms have stayed in one stretch. OK, I've talked to much, anyhow, interested in your responses, stories of diagnosis.

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Old 08-31-2006, 03:40 PM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: How long did it take you to get diagnosed?

Dear CS, You can NEVER talk too much here. Talk all you want!

My Dx took years, but I wasn't "classic". I ended up being Dx'ed with a "subset" of SLE called SCLE, which may represent less than 10% of all Dx'ed lupus. So that didn't help. And I stayed ANA-negative, which happens in SCLE maybe only 30% or less of the time, so that didn't help, either. SCLE was only given its own name & unique identifying criteria in 1978; my suburban drs. never even mentioned it as a possibility, as if they'd never even heard of it---another sizeable hurdle.

None of my standard drs. ever mentioned lupus. It was a hospital radiologist doing a kidney function test who let the cat out of the bag. I flew into a rage with my GP over a hospital hall phone while waiting for prelim results. (At least your drs. have been upfront and have used the word "lupus".)

I went right home that day and started researching big-city rheumies, then waited a few months until I had another huge rash, then asked my GP for the name of HIS best choice for my new rheumie. He dragged his feet, but finally picked a practice, which was the same one I'd picked. From there, it took less than one month for a Dx and treatment.

The dermatopathologist the city rheumie sent me to see, as part of his complete retesting, had me recall all my old skin samples from the labs that did the original testing; then HE retested them. Surprise, surprise: my skin samples had been "grossly positive" all along.

As you can see, I wasted a lot of time. That's the main reason I post here, I think, so *maybe* someone else can read something I may write, however sloppily, that can help them get onto a faster track. So that's it, the expurgated version. Bye for now, Vee

Old 08-31-2006, 03:50 PM   #3
Join Date: Jun 2005
Posts: 74
pambyboo HB User
Re: How long did it take you to get diagnosed?

I took me almost 10 years- but I suffered with symptoms for 5 years before that. See my posting under "confused, 6 out of 11".

Old 08-31-2006, 04:32 PM   #4
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Suni321 HB User
Re: How long did it take you to get diagnosed?

Hi Circus Squirrel, sorry to hear you are having such a rough time of it. Hang in there. Getting diagnosed is difficult as you can see by Veej & Pambyboo's posts above.

You would think since over 1.2 million people have Lupus & the majority are women that it would be easier but, doctor's are often hesitant to label someone with Lupus.

I have had symptoms for over 10 years (& discussed my symptoms with many doctors) and it was only within the last year & half that I was finally diagnosed "offically" as Lupus. And that only occured after I ended up in the hospital. The Rheum Dr. in that situation had been seeing me for 4 months and despite having many of the Lupus criteria had been hestitant to put the label on. Previously saying it's potentially Lupus or it looks like Lupus. I've seen many doctors and have yet to find the perfect fit. But, I keep trying & keep working towards feeling better & I'm still with my original Rheum who diagnosed Lupus. I do go in stretches or "flares" where I improve for a little bit & then "flare" again.

Hang in there & make sure you get copies of your labs in case you need a second opinion.


Last edited by Suni321; 08-31-2006 at 04:37 PM.

Old 09-02-2006, 08:32 AM   #5
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tracylyn12077 HB User
Re: How long did it take you to get diagnosed?

I became sick in August of 93 and was diagnosed in December but not officially until February of 94. Sounds like I was luckier than most.

Old 09-06-2006, 07:48 AM   #6
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Join Date: Nov 2004
Location: UK
Posts: 1,558
goldenwings HB User
Re: How long did it take you to get diagnosed?

Hello everyone,

I was so very "lucky". It took about 5 days for a definite diagnosis. I had juvenile RA too, but the underlying problem was SLE. That was over 30 years ago too, so yes I was very lucky.

By the way, good to be coming back more and more. Missed you all.

Take care

I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Old 09-06-2006, 04:35 PM   #7
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Re: How long did it take you to get diagnosed?

GW, Hi & greetings! It's so good to see you back. Always, Vee

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