Have I got Lupus or not???? ...anyone able to listen or advise???

Maaaannnn.... it's driving me crazy....

I was suffering chest pains and went to the hospital for a chest scan... I was told that I have multiple blood clots in my lungs... so started taking 10mg wharfarin as advised and Clexane injections for the first week of treatment.

I've had blood test after blood test, including lupus... all came back negative...

Then my hair started falling out... in patched.... quickly... and only have 50% of my hair... (in six months)

I know that Wharfarin affects the results of a Lupus test and I've recently stopped taking wharfarin to be re-tested... currently awaiting the results but I'm still half expecting it to be negative again.

I'm also now in so much pain now too from my joints, especially the soles of my feet, I'm almost constantly in agony.

I'm told that due to some other factors, I'll be on wharfarin for life.

Given that so many posts indicate that diagnosis is so difficult, does anyone else have an opinion on my situation????..... Have I got Lupus or not!!!?

Thanks in advance for any advice out there!!.

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11 Replies

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  • Some people with Lupus also have Hughes Syndrome, which can cause repeated blood clots, and those with Hughes Syndrome often have Thryoid issues and also Sjogrens! Hence lots of us on several forums. I hope your rheumatologist gets to the bottom of this. MaryF x

  • I think we all would like to advise, and I am always ready to listen, but no one can say yes you have got lupus. I can only sympathise and hope for you that your diagnosis (whatever it is), comes soon. Yes joint pain and hair loss are some of lupus symptoms, but I'm sure there are other conditions that have these too. I can only say through experience that, I was ill for many years before being diagnosed. The relief that I was finally believed and not some nutter, was therapy itself. I too had many negative bloods and in 12/13 years I have only had 4 positives. At least you are getting the right attention and they are not ignoring you.,(investigation wise). If you think you are being left too long then don't sit and wait. Keep on at them but not aggressively. Keep letting your GP know how you are suffering, they may hurry things up or at least give decent pain relief. Good luck.

  • Thank you for your reply.... It means a lot that you would take the time to repond to my concerns... the joint pain is increasingly difficult and sometimes takes me up to 20 minutes just to get out of bed in the morning which has an impact on my work and my life in general, not to mention the pain... Thanks again... I'll keep pushing the GP... all the best.

  • Hi Paul

    I fully sympathise with the difficulties of getting a diagnosis. I'm still trying after 28 years of negative or inconclusive tests but with very real symptoms to have to deal with and it's a long, tough road. Hopefully you won't be as long as me. My Rheumy at the moment has just done more bloods as he's undecided about whether my joint /muscle pain is inflammatory or not and I've been thinking I bet they 'll be negative or inconclusive-why suddenly change?. My Consultant made me feel I was making a big fuss so it's hard and I wouldn't wish it on anyone!. I hope you have success and sorry about the blood clots, hope you feel better soon. Cheerio.

  • Hi Misty... thank you for your reply... it means a lot just to know there are others that know what I'm going through.... I'm in a relatively new job at the minute too, so been hesitant to talk to my boss... moreso that it's the admission that you are not up to the job as much as once beleived... thanks again and all the best.

  • Hi Paul

    That's tough having a new job to cope with too! Have you got a Rheumy Consultant? If symptoms continue to be troublesome might be worth seeing th em earlier.Does your work have an Occupational Health dept? They can also be helpful if you need different seating or anything else to help you do your job. Best of luck. Misty

  • Hi again Misty... Well it appears I've been somewhat confused.... I went to see my consultant today.... half expecting them to say that I have Lupus and half expecting to say I heven't... It turns out that she's just a haemotologist who's been managing the blood clots in my lungs... and has now referred me to a rheumatologist to follow up with lupus investigations... I've already seen a Rheumy at another hospital for back pain and they appear to be treating them as seperate issues... so feeling rather deflated, particuarly as the pain in my feet, legs and back are so severe... she ageed that diagnosis is difficult, and that even though my lupus test results are currently negative, this doesn't always appear conclusive... at least I know that I have to take 12mg of Wharfarin a day and I'll be on it for the rest of my life. :( Thanks again for your advice and support.

  • Hi Paul

    I 'm sorry that your going through it at the moment. I reckon with your symptoms that you should get a diagnosis from this new Rheumy. If you've got the strength you could ring the Hospital where you saw previous Rheumy about your back pain and ask for the notes to be sent to new Rheumy. It all helps with the clinical picture. I have back pain too and have injections for it. I'm sorry too that your on Warfarin for the rest of your life, hard adjustment to have to make!. I hope you don't have to wait too long to see new Rheumy. How's your new job? Best of luck Misty.

  • The problem with lupus is its very good at disguising what it is!

  • Doctors prefer to use the m-word “mimic” instead of the dreaded m-word “misdiagnosis”,

    but in reality there is only excusable or inexcusable misdiagnosis : no disguises , no mimicry.

  • There are "overlap" syndromes which can include of features of Lupus ...

    en.wikipedia.org/wiki/Overl...

    en.wikipedia.org/wiki/Mixed...

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