Hi I’ve been Trying to find a diagnosis for some time I had an MRI scan which showed lesions on the brain about two years ago I was diagnosed with MS my mum had MS and then I had that diagnosis taken away I was told I had lupus and then that taken away due to bloodwork my only bloodwork that I have is high ACEI see a sarcoidosis specialist and he believes I do not have neurosarcoidosis but UCTD but my rheumatologist says I don’t have a uctd and discharged me I’ve been on 60mg of steroids for a week tapper down 10mg a week and dropped from 10mg to nothing which has made me ill again.
The steroids where for my eye o think optic neuritis type issue although they are not being very clear or investigating Especially now with CD19
I have terrible issues with my neck where my muscles as on my neck are weak I have problems with my eyes headaches floaters spine shakes sometimes and all my lesions are in the wrong area for area for ms temporal lobe i think ! I haven’t had scans for a year now and as it was all due I’m guessing I won’t for a while given everything that is going on!
Anyway any advice would be grate xx
New experience of fatigue
Advice please
Yet another flare
Advice on steroid use
