"grey area for LUPUS"

[winterbaby07]

Hi I've been ill for months now. It started in 06/14 unexplainable fevers, just flu like symptoms in June. Then I was treated for Pleurysis and Pericarditis in November and I had a mental/psychosis issue in March 2015 I don't really know what happened. I just began crying and walked off my job. I ended up driving around for hours and just in complete confusion. I had 10 tubes of blood taken at the GP office and they called today "Grey area for LUPUS" I need to see Rheumy to get Dx...... My knees, fingers and glands are swollen. I can't sleep my knees hurt so bad. I am on 40mg of Prednisone my GP said I was just too swollen etc... She stated she knew I had some type of Rheumatic disease she just didn't know which one. Oh and it seems as if I've been in a flare since I landed in PA from Jamaica.... I've been suffering since. I cannot work, I can barely get out of bed in the morning to take my kids to school. I have to lay down every 2 hours or my world is a wreck. My husband is my rock but I really feel hopeless... Please help, I don't know what to do my fog is horrible and now my lower left back is killing me!!!!!!

[Bronagh2015]

Oh winter baby you really are having a terrible time my heart goes out to you! I really do think your gp has gone down the correct route with you and things will become clearer when you see a rheumatologist. Believe me this is the worst time before a diagnosis but the pred should start to take effect and hopefully keep you going till you get your appointment. A lot of your symptoms are exactly what I was suffering before I was diagnosed, flu like, swollen fingers and chest problems etc. I understand how frustrated and worried you are at the minute but honestly things will improve when you see a rheumy and get started on the right medications. Chase up your appointment and keep the pressure on your GP to have you seen as soon as possible. Please keep in touch with us on this site we are all here to help. Take care 😊

[Paul_Howard Partner LUPUS UK]

Hi winterbaby07,

I'm sorry to hear that you are having such a difficult time at the moment. Have you been given an appointment to see a rheumatologist yet? Hopefully the steroids will help to ease your current symptoms in the meantime.

If you would like more information about lupus, we have a free pack which you can download or request at lupusuk.org.uk/want-to-know...

[winterbaby07]

So I reviewed my labs and I have VitD deficiency (low), Complement ch50 is high, DS DNA high, and iron binding capacity is low.... What does this mean????

[Musicteach]

This sounds like my diagnosis of undifferentiated connective tissue disease. I am told that I have symptoms of lupus, sogrens, rheumatoid arthritis etc.. Mind fog and lots of other things... I am now on plaquenil, methotrexate and lansaprozole for acid reflux. This works to some extent. I only got some answers when I spent out for a one off private appointment, which I really feel is out of order for those who cannot afford it. My worst symptom is my voice is so badly affected and my hands, which is pants as I am a singing teacher!

[winterbaby07]

Omg this rash on my face it's like a mask!!! Swelling went down aches pain and stiffness back now that I'm off the Pred40mg daily! It's like everything is coming back now that the ores is done and songs this rash on my face!!!! Now my vision is just going I have to keep squinting to refocus, my hands are beginning to lock up really just my ring and middle fingers , migraine is back, I can't focus or concentrate and I'm in bed 15-18 hr a day I lost my job and nobody is really doing anything to help I'm in pain and I can't sleep!! Who suffers this way in 2015? Please help me!!! I think a flare is coming but I don't see rheumatologist until5/12 for my initial visit and I'm so not confident in a diagnosis or any relief!!!!