Waiting on Diagnosis

I have recently been to Rheumatology after being referred by my GP following a positive ANA result. I have now been recalled for more blood tests including Haemochromatosis due to high transferrin saturation. My Cons thought I maybe 'borderline' Lupus and I am a bit confused. My symptoms have included finger and toe joint stiffness and pain particularly in the morning and more recently wrist and elbow joint pains that seem to radiate along my arms. Also pain in my neck and shoulders and I suffer from migraines. I have hair loss and thinning around my hair line that is now very noticeable. I am extremely tired especially in the afternoons and after being abroad this year I spent nearly a week in bed due to extreme fatigue. I have redness to my nose and over my nose and slightly on both cheeks that looks like broken veins and isn't raised. I suffer from racing heart and sometimes really heavy chest. I have low blood pressure 95/60 and occasionally feel light headed and dizzy. I regularly have a sore tongue and gums and sometimes red sores inside my mouth that are not quite ulcers. Any suggestions welcome as I feel like I am in Limbo as I have been back a forth from the GP over past few years.

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  • Sounds like full lupus to me, not borderline. You'll feel much better once you've been on lupus treatment for few months, so get your rheumatologist to move faster in getting you there. If the tests take a long time, get him to put you on a short course of Prednisolone (steroids) to help you improve in the short term. The thinning of the hair is something many of us suffer with but in the scheme of lupus symptoms, that's not the most important to your wellbeing, you'll see.

    Good luck with the diagnosis and let us know how you get on.

  • Thanks for your reply, its very daunting at the moment but good to read others posts on here. Will keep you posted.

  • I had all this and more this summer, ending up in a wheelchair and still need a walker sometimes. My rheumatologist did nothing despite me pleading for help, and despite a positive lupus skin biopsy, because apparently I was 'anti ro but not anti la' with only a 'lupus like illness'. As for the Louise Coote unit, because upon cursory physical examination of hands and feet I did not display flaring, I was summarily dismissed. Now I dread the onset of spring snd another 6 months of pain, rashes and disability. I'm 50 with a young child and despite being educated and articulate with fighting spirit, am still battling for a diagnosis. I first presented with ANA 20 years ago!

  • Hi mctag44,

    Hopefully the further blood tests that have been requested will lead to a diagnosis for you so that you can start on some treatment and get these symptoms more under control. If you'd like more information about lupus and how it is diagnosed I would be happy to send you a free pack? Just send me a private message or email paul@lupusuk.org.uk with your name and address.

  • Thanks everyone for your replies. I had never heard of Lupus before my GP suggested it, I feel grateful that this forum exists as I have been able to read others posts and symptoms so don't feel alone with this.