Negative blood tests

[Evie26]

Hi I had an appointment with my rheumatologist last month. She had a quick look at my hands and then pressed on my shoulders and asked if it hurt, it did ever so slightly but I think this was because of the way she pressed rather than any pain response. She then asked about my sleep. I find it tricky to shut off so do have sleep issues. She then said that she thought I have fibromyalgia, which I don't believe I have as my symptoms don't fit. She also said that she would like to recheck my lupus bloods, these have always been negative apart from a raised esr and crp. I have since read on the letter that she sent to my dr that she doesn't believe I have lupus due to my negative bloods. I have been diagnosed for over 10 years now. My previous rheumatologist took all my symptoms into account as well as my blood tests. I have been on azathioprine for about 10 years, this made a real difference to my inflammation levels and pain levels and seems to be the only thing that has brought them down to normal levels. My question is how do you think I should deal with this?

[KayHimm]

Hi Evie26 -

If you were misdiagnosed with lupus and put on a serious drug like azathiaprine, then you have a right to be angry. But first you need to get clarification from your rheumatologist. She may be saying you have an autoimmune disease and fibromyagia but she doesn't think it is lupus specifically. If you mean your ANA is negative, then that may be why she is questioming the diagnosis. Did you have other auto-antibodies msybe that were positive? Quite a few people here have that scenario.

It would be helpful if you list your symptoms. You must have had somthing concerning for the rheumatologist to put your on a DMRD.

I know this is upsetting. Hope you get answers.

Kay

[KnitSewPurl]

Hi Evie26,If you say you hv been diagnosed with a condition 10 years ago what was your blood results then did you hv a positive ANA back then also did any of your clinic checks showed any proof of any skin inflammation rash or psoriatic issues, also swelling in joints,mouth ulcers , pain in all joint not just one especially fingers and toes these

If this is a new Consultant she should be looking into pass records as to why you were diagnosed before taking you off it .

If you do get any rash , swelling or lesions and psoriasis, suggestion is to photograph them to keep a record of them . Before your next appointment.

[KnitSewPurl]

Also keep a diary of when you have night sweats and flare ups.

[Bakbre]

Speak to your Rheumatologist and/or Specialist Nurse and explain the situation you are having with your GP Doctor.

Unfortunately I do not agree with many GP's when it comes to Lupus or inflammatory diseases because I am afraid they do not know enough about them. For instance my GP, had me make an appointment to see him before he would give me the first repeat of my presciption for Lefludomide which my Consultant had just put me on, said and I quote "I don't know the first thing really about Lupus apart from it being an inflammatory problem and I don't really want to know"! When I asked therefore why, if he didn't know about the disease had he put a stop to the repeat, his reply was I didn't know if I really needed it. I obviously answered I am not a qualified doctor but I believe my Consultant is, so if he put me on this, that's good enough for me. Needless to say I now see another GP!