I have just been seen at Guys Hospital....I did not get to see the consultant I wanted (experienced in seronegative lupus) and I have been Let down again because blood tests and back all negative. This is the fifth rheumatologist I have seen who refuses to believe I have lupus despite all these symptoms;
Joint pain
Muscle pain and weakness
Fatigue
Dry vagina
Painful sex
Headaches and memory problems
Facial rash (permanent)
Photosensitive face
Frequent sinus infections
Cold fingers turning pink/purple in the cold
Unable to regulate body temperature
Mouth ulcers
Digestive issues
Thigh muscles swelling
Plantar fasciitis
I'm sure I have forgotten a few but that's most of them.
I am just so fed up of being in pain every single day and not getting answers as to why! I have been on Hydroxychloroquine for a few months which helps a lot with my joint pains so if this is working it's obviously autoimmune. I just want someone to say yes I agree it is lupus/ Sjögren's or whatever and one day my blood tests will catch up!
So sad
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Annalouk
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I forgot to say I have a fibromyalgia diagnosis and because of this they seem to want to put all my symptoms down to that whereas I feel this is secondary to my original symptoms including the joint pains.
sounds like we have similar symptoms and experiences, although I've still not managed to get any one to perscribe hydroxychloroquine yet.
I saw a rhuemey a couple of weeks ago who was very sympathetic at first meeting, even agreed to give me prednislone for 2 week trial to see if it helps. He said I couldnt stay on it long term coz of side effects, but if it helped then I could have the hydroxy...... anyway, went back two weeks later only to be told all bloods were negative so cant have any treatment!!! the steriods really helped, i dont see why I cant just try to hydroxy....., surely its better to take 1 pill that helps and allows me to lead a normal life, rather than hundreds of opiates and NSAID's and leave me passed out on the sofa all day.
Ive been refered to St Thomas's (although i think im going to pay to go to London Bridge as waiting list for St Thomas is probably really long), lots of people have told me that they recognise seronegative autoimmune conditions and are willing to treat them. Im not sure if they're very keen to give a firm lupus diagnosis for seronegative patients, but they will treat the symptoms- you day you've seen 5 Rhuemeys, have you been to St Thomas's yet??
Sounds like everything I went through prior to my Lupus diagnosis. A good Rheumatologist always helps. Sometimes it takes a while to find a good one. If you're not happy with the one you got, trade up for a better one. Will save you time and money and your health potentially. Some doctors have issues recognizing Lupus because it can mimic the symptoms of so many other diseases. Some are afraid to treat unless they know what exactly is going on in your body.
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