I have just made another post about my reduced mobility so apologies for that.
I was diagnosed with SLE in January 2018. In the time from diagnosis until now I have had the following antibodies: ANA, dsDNA, Mi2b, Ro52, Rheumatoid Factor and anti-cardiolipin.
For some reason UCTD was the diagnosis put on my consultants letters. In March when I saw my consultant she put in the letter to my GP "I have no doubt she has SLE and not sure why UCTD was on her letters."
Last week I was admitted to hospital for steroid infusions following severe muscle weakness. In this time I saw maybe 6 different consultants. Not once have I seen my own.
Today I saw they had written to my GP after my discharge. They said this:
"Please note ANA now negative. Considering possibility of Fibromyalgia diagnosis. Will explore when we see patient in September."
What is going on? I'm scared and confused. I have no doubt I have lupus. My consultant said the same thing only in March.
Please help!
I can definitely see why you are confused. With your positive anti-DNA and anti-cardiolipin, the doctors were definitely seeing that as pointing more specifically to lupus or at least lupus-like CTD. It would be very odd for a rheumatologist to go from SLE to fibromyalgia because one ANA was negative.
Could it be they meant two different things? One is your ANA is negative now. Two is the muscle pain is fibromyalgia related to your lupus.
Do you mind telling us your symptoms that led up to the blood tests?
K
My initial symptoms that led to my diagnosis? Mainly joint pain and inflammation. GP thought I had RA. Sun sensitivity, headaches, ulcers, hair loss etc were all discussed at the initial Rheumatologist appointment. GP had already done full bloodwork so I was told lupus in that first appointment.
I don't really know what they mean with the fibromyalgia and ANA comments. I'm tempted to call my consultants secretary to ask for clarification but I've never done anything like that and don't want to make a fuss.
I have also been referred to neurology for muscle biopsy and other tests for my muscle weakness. That's over the next few weeks.
If you are confused , definitely call for clarification. I would be stunned if the rheumatologist is changing your diagnosis for the reasons given. The UCTD vs lupus is not very important, particularly early on. Some doctors have a higher bar than others. But your doctor said “definite” lupus. And you have both clinical signs and lab results consistent with lupus.
You have been on steroids and MTX. If you were misdiagnosed, that would be a huge error. I really do not think that is what the doctor was saying.
Keep us posted.
K
I was also referred to neurology to check if the Lupus was causing the burning/tingling/feeling of weakness in my arms and legs. A diagnosis of Vasculitis was looked at but no evidence in MRI - I ended up being diagnosed with Fibromyalgia.
..it’s also possible to have Lupus and Fibromyalgia at the same time. Also see my other reply - my ANA went negative after a few years and lupus is now ‘dormant’ and I have diagnosis of Fibromyalgia.