New to this and needing help

Good morning all, im new to all these message boards i do this on behalf of my 19 year old daughter who has been sick for 3 and a half years now i sometimes feel like im going round in circles lol we saw a rheumatologist last year that was very dismissive of her symptoms because all her blood work was ok but the gp has now sent her for a second opinion with a new rheumatologist just want to know if anyone has ever had lupus diagnosed with out the bloods on board

Her main symptoms severe ibs,joint pain in knuckles jaw and hip constant sores in mouth and nose intermittant fevers hair loss severe tiredness her body feels so heavy i could go on and on lol thankyou for taking the time to read

Sorry forgot to add she has also got raynaurds and what looks to be the butterfly rash over her face she also gets intermittant painful rib pain x

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  • Hi lucida

    Sorry to read of your daughters problems, must be very worrying for you but you've come to the right place!.

    It's good your daughter has been referred for another Rheumy opinion because blood results are only a part of the diagnostic picture!. They should listen to symptoms and take a detailed history. These illnesses are difficult to diagnose and it's very possible to have sero- negative lupus. A Rheumy with an open - mind is what's needed who will take this into account when seeing your daughter. Good luck with the appointment, hope it's soon and let us know how it goes. X

  • Thankyou misty14 for taking the time to reply im so glad i found this place x

  • Hi Lucida. It's always so worrying when things aren't going well for our children. I have a 12 year old daughter with daily joint pains so I'm watching her carefully.

    I started to get intermittent pain & swelling in my finger joints way back in the early 1990's when I was in my 20's - I diagnosed myself with RA and, due to my dread of doctors, just ignored it. As the years passed, the symptoms nudged gradually worse so the GP ran successive blood tests but all were negative & I was struggling at times to use the steering wheel/handbrake in my car so I was referred to the local Rheumy. My initial appt was 2001 & my presentation was so compelling that I was diagnosed with lupus there and then and given steroids. Blood tests were continually negative except for low WBC but the dx remained.

    The years ticked on, 3 difficult pregnancies, fluctuating joint swelling until 2011 when things suddenly worsened. I changed Rheumy and he queried my original dx which isn't surprising given the lack of 'proof'. I was sent to a highly regarded lupus professor who confirmed that I do indeed have a CTD - best described as SLE/UCTD. I get a wide range of symptoms (no skin or hair involvement) - badly swollen joints, fatigue, respiratory issues etc. I have had a weakly +ve ANA, low complement, raised ESR (normal crp) and a very low WBC. All these fluctuate except for the WBC which is constant.

    So, as you can see, diagnosis is still possible but it's harder to achieve. I'm glad you are getting a second opinion - I hope it's to someone very experienced in their field. I hope this helps.

    Best wishes, Clare X

  • Thankyou clare thats a very helpful reply and yes its so hard to watch our children suffer i have read lots of stories that it takes many years to diagnose so hopefully after 3 and a half years were edging closer im just so glad my daughter has a great gp who straight away wanted the second opinion xx

  • Hi Lucida951,

    Welcome to the LUPUS UK HealthUnlocked Community!

    I am sorry to hear that your daughter has been poorly and that she was not satisfied with the rheumatologist she had seen last year. I hope she has a better experience with her new rheumatologist, please let us know how she gets on.

    Joint/muscle aches and pains are one of the most common symptoms associated with lupus as well as mouth/nasal ulcers and a malar (butterfly) rash. To learn more about the symptoms of lupus, you may wish to download or request our free information pack here: lupusuk.org.uk/request-info...

    We run young people support group meetings throughout the year which may of interest to your daughter. For more information on how she can attend a meeting click here: lupusuk.org.uk/lupus-in-you...

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