Last year at this time my GP finally referred me to a rheum 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 rheum 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.
- CONSTANT headaches
- 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 rheum calls it malar rash)
- Feels like something is stuck in my throat when I swallow
- Speech difficulties
- 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 rheum 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.