My journey started many years ago when I was just 15 years old. I suddenly felt sick and ill, cold and weak. A few months later, I couldnt keep food down, I couldnt think, I hurt too much to move. I went to hospital and spent 3.5 months in hospital where they treated me for multi organ failure and gangrene. As a result, I have poor sensation and function in my peripheries and the pain I have is bad on a daily basis. Sadly, thouh diagnosed with lupus, they wouldnt give me any medication to stop the autoimmune processes affecting my organs.
Fast forward to this time last year. I was driving, as I usually do, when I blacked out and awoke with a crashed car, and fortunately no one was injured. I kept having episodes of dissociation, episodes where I burned up, felt nauseous, had right sided shakes and collapses. On seeing my GP, they said it was likely anxiety, and nothing wrong. They said I should continue to drive. And though hesistant, I needed to drive to get to work. Again I blacked out in the car, and awoke elsewhere. My memory, bad already from lupus, seemed to be missing weeks and months at a time. And still these focal seizures would occur.
A few months later I got a neurology appointment and an MRI scan after without contrast. I called for the results for months and was told that I would hear back if there was anything on them of concern. Then 7 months later, I received 3 MRI scan appointments out of the blue. By this point I had managed to get a new rheumatologist, so I asked her about them. She looked at me mortified and asked 'How are you even standing??', I asked 'Why?'. She showed me the result and report of the MRI scan without contrast 7 months prior, that showed a huge lesion coveringthe whole of my left parietal lobe and some of the temporal lobe, which had haemorrhaged. Now these symptoms, that many had said were made up or anxiety, made sense.
These scans I have next week, will determine if the lesion is from lupus or from a tumour, either way the length of wait and time will surely make a huge difference on things especially as the last MRI scan showed I was still active bleeding, and they have left me for over half a year in that position.
At least I may be getting answers, but I feel as that is only the beginning of my issues. Whether lupus lesions or tumours I feel damage in many of my organs, but God will give me strength.
When you think something isnt right, it is not blind hysteria, we know our bodies, and it takes one person to believe you to make a huge difference.
