Last year at this time my general practitioner finally referred me to a rheumatologist at my request after I showed her a list of symptoms that have happened to me over the past ten years or so. I queried had I ever been tested for lupus and she ordered ANA test. The test came back positive 1:1280 Centromere pattern. I went to the rheumatologist who then ran further tests including ENA. Result showed positive centromere autoantibodies (I think that's how you say it) and Anti Ro SSA positive. I do not know the titres for these. They also ran other tests. I have mild lymphopenia and anemia and my C3 is 0.89 (bottom end of normal) and C4 is mildly low at 0.15. My ESR is 2 (normal). I am Rheumatoid Factor NEGATIVE. I have had ECG and PFT both of which were okay. Other symptoms are:
Frequent sores on the roof of my mouth (for no reason), mouth ulcers (for no reason) and in my nose
Frequent bouts of unsettled stomach with diarrhea which has been investigated with scope and nothing to be found, IBS also
Mild dry skin rash on my neck which never goes away
Mild chest pains daily and sometimes I feel a stabbing pain in my chest and have to stop breathing until it passes.
Shaky brain - like my brain is vibrating at times.
Dry eyes which causes severe pain at times
Joint pain and soft tissue pain (could be attributed to mechanical problems only - I've had 2 hip replacements)
Frequent twitching of muscles in arms, fingers and legs
Increased hair loss
Extreme tiredness - EXHAUSTION!
Numb hands, feet especially when laying down.
Red rash across nose (my rheumatologist calls it malar rash)
Feels like something is stuck in my throat when I swallow
Poor concentration and memory
Ever since I can remember, I have had a skin disorder which they have diagnosed as Pityriasis Lichenoides Chronica through a biopsy. So, any time I had problems with my skin, I just thought it was this.
I have had MRI and SPECT which show no abnormalities.
I am 39 years old and really think that I have LUPUS. My rheumatologist has told me that immunologically I have Limited Systemic Sclerosis, but on paper so far it is just UCTD. I am currently taking:
Pregabalin ( I know this can cause headaches and twitching, but these symptoms I had when I was taking amitryptiline as well)
Vitamin D (my levels are 34)
Paracetamol (as much as I can take!)
Plaquenil (on month 5 and no improvement to pain levels or fatigue)
There's probably more stuff I can't remember. I'm looking for advice. What do you all think? I really feel that it is Lupus. Plaquenil is not working. Any advice is gratefully received.