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Discussion Starter · #1 ·
Sorry for starting another thread so soon, but I was wondering how many doctors or appointments you've had to go through to get a diagnosis?

I was just thinking about how years ago I was diagnosed with rosacea for the redness in my face, and IBS for stomach problems. My former doc always tested me for mono, but it was always negative (this was years ago, when I was a teen).

Also, how long were your symptoms present? Does the face rash ever burn? Any female problems with lupus?
 

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Hi Mera,
Welcome,
I've had discoid since 1999, but diagnosed with it early 2000, I've been trying since then to get a diagosis for SLE or what ever it is that's going on with me. Seen 3 specialists, But for years before the discoid i've had strange rashes suddenly appear, and the Dr's have never known what it was or what caused it. But most of my symptoms have been around for years, it has only been in the last 5 years that they have really shown up and more aggressive as time goes on.
Hugs,
Sand....
 

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Hello Mera,

Some people are very lucky (or their disease declares suddenly and severely) and get a quick diagnosis but I'd say that the majority of people here have seen several docs on their journey.

For my part I had symptoms for years but no-one joined the dots. That's not entirely my docs' faults as I would often give up and not go back after being told that "nothing was wrong" because blood tests were good. When I did eventually see a rheumy she was the one to diagnose me but even then it took around 6 months and three separate visits. I also wouldn't have been diagnosed if she hadn't sent me to a dermy for a skin biopsy which, along with clinical symptoms, clinched diagnosis.

One thing you can do to try and reduce the number of docs you need to see is make sure that you see an auto-immune specialist. Not all rheumies are true specialists in auto-immune diseases. You can get recommendations here in the find a doctor section. You can also use the search function to see if there have been any threads looking for a doc in your area.

Whatever it is that you have wrong you mustn't give up and just keep pestering until you get heard. My diagnosis came after a conscious decision that I knew that my body was not reacting like this through old age (I was 35) and that I needed answers.

I know that you have a fear of doctors but it really is important to find out what's wrong and make sure you don't cause yourself any further harm through lack of treatment.

Katharine
 

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Hiya.. I was one of the luckier ones.. had agonising joint pains, fatigue, rash etc etc for five months.. think I had the malar rash though for several years without much else rearing its ugly head.......my rheumy said something dramatic may happen..it did.. in hospital under his care had a full and worrying flare affecting breathing, heart rate, mobility.. had a variety of tests whilst flaring and he was able to diagnose me based on all this info..so I only saw one (new) Rheumy...in hindsight I think he could have done so earlier as I had all the symptoms including RNP positive bloods for MCTD.. can't complain though, at least it was quickish!!!
Claire X
 

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Hard to say really. I'd had random what I thought were unconnected bouts of illness off and on for years - especially random bouts of rashes with high temperature which my GP thought was shingles. But July 2008 to April 2009 was my actual diagnosis path - GP in July with numb hands (woke up with it one morning and it never went away), referred to hospital, saw an outpatients consultant 3 times - first time had blood panel done (usual stuff, thyroid, anaemia, ANA), second time had it redone as positive ANA was suspected false positive due to a chronic chest infection, sent for nerve conduction study which was fine, back to outpatients who discharged me back to my GP for referal to rheumatologist, saw the rheumy once for medical history and full blood panel and then second visit rheumy said they suspected mild lupus and wanted to start me on plaquenil.

And my face rash isn't raised, it looks like I have sunburn and sometimes it feels like that too, either that or I drink too much and have a ruddy face!
 

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Would you believe it only took one doctor to get diagnosed?
My lab reports were screaming lupus. I was feeling really lousy at the time.:( This was done by GP and I went on to see rheumatologist who only confirmed that I had lupus.

Take care,
Lyn


 

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Discussion Starter · #7 ·
Thanks for the feedback. To help battle my depression, I've spent much more time in the sun this summer. Not sunbathing, but sitting on the deck reading, and wearing sunscreen. It helped my depression, but really seemed to increase the lupus symptoms. I thought I was sunburned across my nose and cheeks, but it never peeled or itched like a sunburn. I realize now, of course, that if could be a sign of lupus, and those with lupus should stay out of the sun.
 
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