Hi,
Diagnosed Lupus Jan 2018. Positive ANA, dsDNA, Rheumatoid Factor, Ro52, Mi2b, anti cardiolipin numerous tests over the past 20 months)
I was given an urgent referral to neurology (6 weeks ago now - doesn't seem very urgent) after worsening muscle weakness. My physio did muscle strength test, wasn't happy with the results. The next day I had a phonecall from rheumatology asking for me to go in as an emergency appointment the following week day. I did and they admitted me to hospital for 4 days for steroid infusions and further investigations. My CK levels are normal in bloods and have always been. Previous MRI of thighs normal. They discharged me when steroids had a minor positive affect on me.
Since then I've been up and down, but mainly much much worse. My GP had to sign me off work for the rest of July as I could barely mobilise from weakness. She also tried to expedite my Neurology appointment. I've had numerous tests but still waiting for my appointment and results.
I'm currently waiting on results for a muscle biopsy (4 weeks ago), MRI (3 weeks ago) and EMG test (1 week ago).
I have my next Rheumatology appointment 16th September but I probably won't even get to see my consultant as it's always someone new each time. Combined with strange situation with my previously always positive ANA being negative (after 3 days of steroid infusions - not sure if this could be reason) but it seems they're wanting to change my "definite" (as written my my consultant) Lupus to Fibro according to a letter to my GP from someone who treated me during hospital stay (not my consultant).
I'm just feeling like I've been forgotten about and that if there's no conclusion from all these tests, and they take my Lupus diagnosis away I'm going to essentially be bed bound on and off aged 26 with no explanation and no help offered. What do I do. I'm feeling very anxious and don't know if I can wait another month for answers in this state.