Day 16

Moan time. I've had a night of crap care from agency staff: observing record falsification, major drug errors (or completely missed doses) and essential things in my room (call bell, water, frame) being left in completely inaccessible places. I'm terrified that I'll have another seizure (entirely possible, given they seem to be making up the dosage and frequency of my anticonvulants as they go along) and won't be able to fight my corner for a little while. I don't trust some of the staff here enough to be sure I'd be safe if that were to happen. I've made a complaint to PALS who said I'm not the first to raise issues with these agency nurses, so hopefully something might change.

On a more positive note: I saw a neurology consultant today (I love this lady). She's completely puzzled by me. She was really helpful in breaking the situation down into 'what we know' and 'what we suspect'. 

We know I had 6mm of fluid on my brain on 3rd October, and we know that it had gone by the 6th. We know I've had right leg paralysis with a mix of diminished and absent reflexes for >2 weeks. We know I'm retaining a lot of urine. We know my spinal MRI showed nothing structural which could plausibly explain the fluid or my leg. We know my CSF indicates meningitis, but we also know it's not one of the 9 most common viral infections screened for. We know I'm moderately neutropenic.

From this, we suspect I no longer have an abnormal amount of fluid on my brain. We suspect the cause of my leg is in my spine. We suspect that the cause could be either an incredibly rare CSF virus (which would explain the low neutrophils) with no available treatment, or a fungal infection of the CSF. We suspect, given my history of autoimmune diseases, that the cause could also be autoimmune.

Because of the uncertainty, I had a repeat lumbar puncture today which was a lot less pleasant than my first one... although nowhere near as traumatic as my central line insertion! Depending on the fungal and autoimmune results of this, I may be discharged to neuro rehab as early as sometime next week - although given how long it took for the results of my last one, I'm a bit skeptical! I'm hoping that my rehab will be in Cambridge(shire) so I'm closer to my old life in the geographical sense, if not in any meaningful way.

Also - save the best news 'til last - I removed my catheter today, and managed to pass a decent amount of urine without applying abdominal pressure or feeling any retention afterwards. It's really easy to say "well done, you had a piss, welcome back to society", but it means I've got sensation and control of another nerve so it's a huge step forward.

Well, anyway, I'm proud of myself.

Love Emily x