I have been having lupus type symptoms for a while now. Sore joints/ muscles, fatigue, mouth ulcers, feel extremely cold then sweat like mad. Also lost some hair and get a rash when I'm in the sun. Dr said my Ana results are normal and he's not referring me to a rheumatologist. Feel

Like I'm going mad. Has anyone else had an experience like this?

12 Replies

  • Has your GP offered an alternative diagnosis for these symptoms? You may be best trying to see a different GP for a second opinion. It sounds as though you are experiencing symptoms of an autoimmune condition, whether it is lupus or not, and a rheumatologist will be the best person to diagnose and treat this. A different GP may be more willing to refer you.

  • Hi, my GP has suggested its viral! Think it might be the longest lasting virus ever. After another phone call today he is referring me to dermatology to have a biopsy taken. Can discoid lupus cause joint pain and mouth ulcers?

  • I believe that discoid lupus can cause those symptoms in some cases. I'm glad to hear that you are getting a referral to a dermatologist at least. Hopefully this will help you get a diagnosis. Let us know how you get on.

  • I had the 'Oh, it's probably just a virus' reaction for 25 years from Dr's until I finally demanded to see a Rheumatologist last year and got SLE diagnosed. The diagnosis came quite quickly once I was in front of the right Dr, but I had to demand it and ignore all the rubbish the GP was spouting!

    You definitely have many of the symptoms of Lupus and sometime the blood results can be misleading, or at least not conclusive, so you should push to be referred. It's not easy though, I know, especially when you don't feel well!

    Good luck with it all!

  • It was a dermatologist who diagnosed my lupus (plus a load of other things as well), so I wish you all the luck in the world. Most importantly, don't give up on trying to get answers, however much you might feel like you're fed up with being pushed from pillar to post. Good ;icl -= and let us know how you get on!

  • hi i have subacutanous lupus (like discoid but non scarring) for 15 years i got fobbed off at gps because i never had all the symptons at once sadly at my old surgery i used to see all 3 gps i worked full time and wasnt fusey who i saw to be honest (i now only see the one gp)and because of this i have emphazema as lupus has attacked my lungs ,having said this id never even heard of lupus until the dermatologist said this is what you have , nobody even when they took biopsies they said they were testing for steven johnson syndrome and that scared the bliming life out of me when i googled it .

    Apparently ( I SAY APPARENTLY AS NOBODY CAN FIND THESE RECORDS FROM MY GP 5 YEARS AGO!!!)i have had 3 ana tests 2 positive and one negative ,positive 1st neg 2nd then 2 years later positve ana and now syjorns/reynaulds/fibromyalgia/cfs ive learnt that you must take control of your gp/drs/meds as i dont want to scare you , ull find because LUPUS is complex/dibilitating and a majority of the time invisible some people are disbelieving even friends that id had for years , i still say if all my symptons had not come at once i wouldnt have had my diagnoises im not trying to scare monger you im just telling you how it was for me hoping that it wont be for you does that makes sense, i walked around for 6 months with a red ring in my head and no hair around it , i just wore hats and clipped in extentions and my gp told me it was because i was allergic to the perm lotion (as id had a perm 7 months previous) now im not stupid i was holding down a full time job as H.R. officer and caring & home educating my son who has aspergers so i believe him ,i even wrote to toni and guy head office and got them to investigete the ingrediants , whereas if you stick with the same dr they can see the pattern , i was going to the drs every week with swollen glands/hot sweats little rahes here and there , one dr said i was going through early meno pause :@ 30 / then i was told it was due to my ibs so i guess wot im saying is try to stick to the same dr every time . write ur symptons down in case you forget and ask wot the blood tests are for .. i really hope ive helped and not scared u tyx

  • Hi, thanks for the reply kittykat68. I also look after my son who has aspergers. This visit to the dr I have raging tonsillitis on top of mouth ulcers (not a great combination). This gp told me I hadn't be tested for rheumatoid arthritis and proceeded to send me to the nurse for a load of blood tests one of which to do with dry eyes? Results back Monday/Tuesday and we'll see what happens then x

  • ahh god i know that feeling mine used to turn into quinseies and i used to have it lanced apparently its all connected but sjjorns not lupus hey hoe , keepus informed though plz x

  • yes in end. put it down to fibromyalgia ,

  • still same process of dealing with pain , skin rashes and mental state, Just call it another name see same Dr's . but that ANA didn't come back + , Even had the butterfly rash on the face , prominent at one state as much , that I walked into a mobile information unit on Arthritis and childhood illness and the person in there asked me if I had lupus.

    That was about 15 years ago, still not treated for it . I don't even bring it up with my GP.

  • My second lot of bloods have now came back Ana positive (1:60) and high esr (inflammation) but doc not referring me to hospital until I've had another blood test next week (clear of tonsillitis)!! Apparently that's just procedure! Meanwhile I have bald patch , rash on my elbows and sore joints!! How much proof do they need!!

  • Im wondering whether it's Fibromyalgia, Lupus or both. My symptoms are as follows; CFS, Permanently cold hands and feet which go numb to the point where I have to put them into hot water to thaw, sensitivity to sunlight. I ended up in A&E. Rash on my forehead and cheekbones, worse when I walk in the sun, extreme night sweats, very very painful muscles and joints, stiffness in my joints especially in the morning. Swollen ankles and wrists, insomnia, non epileptic seizures, cardiac problems, itching on hands and legs, weakness and tremors in my legs, photo sensitivity, mouth sores especially on tongue, easily bruised, sensitivity to noise. I'm sorry I sound like a hypochondriac, it's driving me insane because I'm dealing with terrible endometriosis plus bowel issues too.

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