LUPUS UK
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query diagnosis

Hi

I am on a merry go round of docs saying it lupus then its not this has been going on for years ! been to rheumatologist today who has tested my urine and repeated more blood tests same ones I have had many times before , I have the rash, extreme tiredness thinning hair and achey joints but my antibodies in bloods are fine anyone else been diagnosed having had their antibodies being fine but having other symptoms

x

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Get that doc to check for TB could be this and make sure they r tested correctly at correct tempratures

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Hi, I have had the same problem. Rheumatoid said I had sympton of lupus in november. Went back March, definitely lupus. 3 weeks later went to Drs. With virus, no lupus on notes from hospital, just blood results and I have rheumatoid arthritis. Someone close to me said if I lose weight (due to steroids) I would walk and feel better.i cannot wait to go back in July. By the way I had a cystoscope and I was told I had a boring bladder, and I go for ultra sound on Tuesday. Anyway good luck.

Daph

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Hi Kaya

So sorry to read your being put thru the mill trying to get a diagnosis. Very stressful that doesn't help your health!. Presumably, your ANA was positive as you've been seeing Rheumy's?. This is not specific for Lupus but it does tell the doctors there is something wrong with your immune system. It is also possible to have everything negative but be treated by an open- minded Rheumy on symptoms alone, many on this Forum fall into this category. Do you keep seeing different Rheumy's?. It's down to this set of blood results and whether your Rheumy is prepared to treat you. Are your symptoms worsening?. They do seem very indicative of Lupus but there are lots of other connective tissue diseases that it can be. I hope you have a resolution soon as this is such a hard time for you. Keep us posted. X

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Thank you for all your replies !! I'm having bloods done next week so see what they come back as this time my symptoms worsen during summer months it seems still have symptoms I'm winter just not as bad xx

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Major frustration! I have hair loss, malar rash, severe joint pain and  sometimes swelling. I've had serositis which required hospital admission, I developed a neurological disorder, livideo reticularis, anemia. I've had extreme low white cell count and suffer from terrible migraines and fatigue. I saw a rheumatologist who said I clearly had ANA negative lupus. All my bloods come back OK except my ESR which is elevated at times. Yet I have all the symptoms. As my specialist said, doctors should treat the patient not just the blood tests. Oh, and since being on meds things have improved. I'm not as good as I could be but things are definitely better than they were. Good luck!

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Hi kaya, yes my rheumatologist is treating me on symptoms as my bloods are negative - was referred to him by a dermatologist in same hospital. So although it's lupus-like, officially I'm being classed as undifferentiated connective tissue disease. The treatment appears to be similar. Hope you find a sympathetic rheumy soon x

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I suffered symptoms of Lupus for years and tested negative when I went to the Dr and said, hey test me, k?  My Nephrologist believed it was L uh pus based on symptoms and referred me for testing at another lab!  Thats when the te see it's showed up positive.  Try that!

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Hi all.

Me to. Malar rash. Cutaneous lupus. Hair loss. Blood clots. Underactive thyroid. Massive weight gain. Joint pain. Low vit d. Livedo and now on my  2nd rheumatologist who again has said not lupus due to negative ANA and as major organs are not affected.

I just want answers thats all.

Xx

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It's so frustrating isn't it !! Oh well I'll just have to be patient one day someone will have some answers ! 

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Wow your the first person too mention weight gain in relation to lupus.I was always slim and didn't really need to watch my weight but in last 4 yrs (just b4 my lupus diagnosis ) I rapidly piled on weight 3 and half stone in approx 18 mths .I haven't changed what I eat and my activity levels have always went up n down.the doctor says I need to eat less move more.I have cut myself to 1000 calories a day tried raising my activity level which in turn makes my health worse but my weight still increases.I feel suicidal at times with the pain frustration and an alien body .

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Hi kaya12,

I'm sorry to hear that you are experiencing so much difficulty getting a diagnosis for your symptoms. I hope that the tests help you get some answers. Have you been started on any treatment?

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Hi I was put in hydrochloxichlorine and they wanted to start mecrapine but I couldn't take it I have a app with cinsultant in nov so see what they say then

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