Awareness for doctors too...

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Awareness for doctors too...

Post by geoff on Sun Apr 12, 2009 1:42 pm

I was lucky... I only had a month of visiting doctors who all scratched their heads, before finding out I had cutaneous lupus (or discoid) by going straight to a Dermo/Dermie.

But I've heard of so many dear people who take 'ages' to discover they actually have SLE. The stress of not knowing what is happening to you, can't help the situation.

I just think that the general medical profession should be made aware of lupus, just as much as the general public should be. This could lead to further studies and fast track research and hopefully a cure one day.

Am I right to say that lupus is taking far too long to be recognized in patients? I know various doctors are swamped with people with one condition or another - but if the awareness was there - maybe they might think, "Hey... that's a symptom of lupus!"

Just a thought - Geoff
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Re: Awareness for doctors too...

Post by AbsolutelyFab on Mon Apr 13, 2009 8:14 pm

I got sick in March 2008, but was not diagnosed until late-July 2008. I had been to doctors every week or so since a minor surgery I had that March 6th. My GP, who is a great family doctor, said right away "it sounds like it could be Lupus" but the blood tests did not show elevated sed rate or ANA, although my knees were bright red, swollen and so hot you could fry an egg on them Shocked . I also had the fatigue, hives and eventually realized I was photosensitive.

After many blood draws that were used to test for things such as Lyme disease and re-tested for Lupus and RA, I managed to get into the Rheumatologist. It was a 3 month wait. In the meantime, docs continued to give me antibiotics thinking it was a stubborn infection of some sort.

Fortunately, the rheumatologist I saw based her diagnosis and treatment on my symptoms and family history, as much as the results of the tests. I have not been diagnosed with Lupus, but "early autoimmune disease" or UCTD - Undifferentiated Connective Tissue Disease. I have the symptoms of Lupus and I'm being treated for Lupus, it just doesn't show up in the bloodwork....yet...therefore, it is "undifferentiated".

I am fortunate to have been referred by my GP to a rheumatologist that wasn't so caught up in the test results that she ignored everything else. I take 400 mg of Plaquenil a day, get bursts of Prednisone when necessary and have regular bloodwork done. Again, I am fortunate it only took 6 months to get the treatment I needed....I've heard many horror stories of doctors telling patients that what they are experiencing is "anxiety", an "infection", a result of "age" or "lack of good sleep". My sister has been going through this recently. Sad I got her to dump her inconsiderate dud of a doc and get some decent help...and she now has a doc that is looking at things much more carefully. She is still waiting for the final diagnosis though.

Hugs,
Beth
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Re: Awareness for doctors too...

Post by geoff on Tue Apr 14, 2009 2:11 pm

Hi Beth!

Your experience sounds so familiar. With lupus there are so many over-lapping conditions to consider - and so much confusion. Not only for those dealing with it or the symptoms, but for GP's and others in the medical field.

With more awareness, hopefully we can make a difference!

As always, Geoff.
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Re: Awareness for doctors too...

Post by Jenny on Thu Apr 16, 2009 6:24 pm

Well, I think I was pretty lucky, really.

As a young Mum of two pre-schoolers and a new born in 1991, I was fatigued quite a lot of the time until one day when the baby was about a year old, my GP said I had been complaining of fatigue, sore joints etc., etc for quite some time, she did some blood work. Results pointed towards Lupus (I think the clinching factor was a very nasty kidney nfection in 1982) and I was referred onto a general physician who did some more stuff and confirmed her diagnosis.

I guess it could be said that I have had SLE since 1982 but it lay dormant since then until I was pregnant in 1990-91 with treatment commencing in October 1992. Sometimes I feel it has been all downhill since then but those moments don't last too long. At least I am here to waffle and bore!!!! Laughing Laughing Laughing Razz
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