Lupas results??help please

Hi I have ankylosing spondylitis which is a autoimmune disease. Also fibromyalgia and rayneuds disease. I've been having signs of lupas which are headaches or migraines. Eyes hurts. Light senstivty. Spots on face. Heat rash or bumps if in sun and legs go really red in sun that looks bad sunburn and heat rash. Sweats. Really bad hair loss also livedo recyltits on arms and legs. Feet go swollen. Painfull joints and really tired. That's all the signs. I tested postive ana which was 1/100 and tested postve anti ds-DNA which was 42.1 and tested negative for the ena. Now my consultant is sure I don't have lupas. Me I think I do. 2 local doctors also felt a letter from another hospital stating the blood results and had wrote in letter I suffered with rayneuds. Fatigue and hair loss and had livedo recyltits on arms and legs both doctors felt this was a supporting letter towirds lupas and have said I need app with my consultant to discuss these results and give all the signs I have but they won't even make appointment for me to do this. So I think I'll have to get a second opion. Anyone know does my blood results indicate it buy the readings please??? Many thanks and would very much appreciate it if could get some answers please.

4 Replies

  • Hi Katrinapidd,

    I'm unable to comment on your blood test results and whether or not you may have lupus, but it sounds as though getting a second opinion so that you can get a diagnosis for your symptoms would be a good idea. It may be worth asking for a referral to a specialist lupus clinic? If you let me know whereabouts in the country you are then I would be happy to provide you with information on where your nearest specialist is.

  • Thanks so much. I'm in Northamptonshire but am already at Northampton hospital and they are ones that said don't have so would need to be a different one. Many thanks

  • Have you seen Dr Rachel Jeffery at Northampton General? She is the lupus specialist in that area.

  • Hi , I was diagnosed with AS in my early thirties, then underactive Thyroid, Sjogrens and Hughes syndrome ( check out the livedo with this condition). I have more or less all your symptoms but now some are much more under control. Firstly my medication to help AS was not strong enough and since that has been increased has helped with pain, fatigue, joint swelling etc. Sjogrens is common with AS and it may be worth you looking at the condtion as there is a lot of help and advice, BSSA is great. I have light sensitivity, rashes, dryness, salivary gland issues, Raynards and take Plaquenil. I have the headaches and left side migraines which with me can be from dehydration, inflammation, sticky blood you need to see agood Rheumatologist who is well versed in autoimmune disease. Who looks after your AS for you ? Have you had Iritis with your AS ?, I have on and off eye pain since suffering from this. With the sweats night fevers can be the AS but for me I also find very hot one minute and then freezing cold even in the day, another autoimmune thing. My bloods were ANA positive, lip biopsy, and positive tests for AS. Hope this helps. x

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