Symptoms of lupus

[Yozzer]

I'm new on here I have just had my second lot of bloods make which have shown positive for lupus again as I was told you Need 2 positive readings before they will actually diagnose you so I am waiting to see my specialist now I have all the symptoms apart from the rash ,I was brought home from work feeling ill yesterday numbness and heaviness and pains in hand and e extremely dizzy does anybody know if these symptoms are related to lupus please.

[Paul_Howard Partner LUPUS UK]

Hi Yozzer ,

The symptoms of lupus can be very wide ranging and vary a lot between patients. Numbness, weakness, pain and dizziness could potentially be symptoms of lupus, although it is not necessarily the only possible cause.

Do you have an appointment through to see your specialist yet?

If you need more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

We also have our full range of publications available to read and download at lupusuk.org.uk/publications/

[Yozzer in reply to Paul_Howard]

Hi yes I have gone private as my NHS apt is still 4 weeks away so I see a Mr Bernstein next week I'm just worried he will send me away saying that my symptoms are all just viral as my other autimun bloods have all come negative even though th lupus has come back twice positive and my fibrinogen is high and my igG is high and my iron is low my neutrophil count has been low as well ,white blood count comes back abnormal too and my ear is always raised .to be honest I've been unwell for maybe 2 years on and of getting. Chest infection sore throats achining body and never seem to shake it of after a few weeks I'm ill again so this time my family said enough is enough this is not normal and that's when I had the lupus test done.

[Paul_Howard Partner LUPUS UK in reply to Yozzer]

I hope your consultation next week goes well. If you want any tips on preparing for it, you may want to have a look at our article here - lupusuk.org.uk/getting-the-...

Let us know how you get on.

[Yozzer]

Thanks I will

[Yozzer]

Hi Paul just to let you know how I got on I had my nhs apt weds just gone with rheumatologist as nhs apt go always running behind then you don't get time to as questions because some of my tests came back negative but some bloods like my lupus anticoagulant and a few others are showing confirmed lupus and I have every symptom going ,her first words was you haven't got lupus??? I was so deflated as you are just wanting a diagnosis she agreed I had something going on as I was in so much pain so she gave me a steroid injection and started me on hydroxychloroquine And to go back and see her in 5 months she gave me no advice on what to do or what not what to do .

Then I had my private apt with Mr Bernstein at spire on Friday omg what a breath of fresh air he was he confirmed I do have a form of lupus he has also put me on aspirin as my bloods are showing that it's clotting and at high risk of stroke or blood clots he done my body 3 times which was really high I explained to him it had been like this for a few months so said I need meds and he is referring me to Ian Bruce at the lupus centre at the royal in Manchester,I felt so positive coming out I'm just so glad I kept my private apt as my nhs one was useless .

[Paul_Howard Partner LUPUS UK in reply to Yozzer]

Hi Yozzer ,

I'm glad to hear that at least you are positive now following your private appointment. I am sorry to hear that your other appointment didn't go so well. I hope that the treatment helps to alleviate your symptoms and that following your referral to the Kellgren Centre your lupus is managed effectively.

[Minka1 in reply to Yozzer]

hi yozzer you usualy find if you go private yoou get better treatment can i ask wether you get any joint pain in knees or swelled fingers at joints like inflamation says on here im not far from you

their is an other good gu called dr david tenby who sorted me out 5 years ago with one injection in the bum hands whent down everything but now mine has come back again but i dont have anything showing in bloods no inflamation nothing at all

[Yozzer in reply to Minka1]

Hi Minka yes I get joint pain and a lot of muscle pain sometimes I feel like I'm carry a tonne weight on my right leg and feel like I have been hit by a bus I have put up with my symptoms for so long I just think it's the norm now !! I have my first appointment on 10rh May with a Mr Ian Bruce at the Royal in Manchester but like you a lot of my bloods show no inflammation so frustrating.

[Minka1 in reply to Yozzer]

hi yozzer thanks for the reply its nice well not nice to here someone has some of the same problems as i have .

I let them go in the knee and its made my knee worse after microfracture both feet go cold and blue then heat up like mad at 9pm every night i got to get up stairs and in bed its that bad now i was doing ok and didnt feel like having the opperation and now i wish i had stayed with what i had if you know what i mean. dont let them into your knees at moment feet are tingling like mad how old are you with and where do you live im at lowton

i have had this 5 times now and have always pulled back now it looks like it here to stay and looks like a whell chair job now.

All started off after a hernia opperation thought i had sprained my ankle then it spread to my knee then other knee then i got lumps on my hand It was then i knew i was in trouble with this thing Winter feet where going blue like no circulation. and like you its verry frustrating having been at gym and swimming and walking and being so fit,