"Bad experience with ambulance and hospital"

I noticed one Friday evening that my feet were numb but didn't really think anything of it. By Sunday morning I couldn't feel anything below my breasts so called 111. I was told that I was probably having a stroke and an ambulance was sent out. The ambulance arrived 45 minutes later, the paramedic did a few basic checks and asked questions about how I was feeling. He then said he could take me to hospital but I'd be waiting 4-5 hours and nothing would be done as I hadn't had a fall or accident that would explain my symptoms. I was advised to stay home and visit my GP on Monday. The paramedic then gave me a sheet of paper that stated that I'd refused to attend the hospital. I went to my GP who sent me straight to Lancaster royal infirmary. I was admitted on to the ward and given a series of blood tests and physical examinations. The doctor's couldn't agree what was wrong with me and I was sent home that evening to wait for an MRI appointment. I returned to the hospital on the Wednesday for the MRI which showed no issues in my brain or spinal cord. The doctor's wanted to send me home again but I argued as I couldn't believe there was no cause. A second opinion was sought and I was readmitted to the ward for a lumbar puncture which showed high levels of protein in my spinal fluid. I was started on a treatment called immunoglobulin for guillain Barre syndrome but the following morning a different doctor appeared and told me that the treatment was too expensive to use when they weren't 100% sure of my diagnosis so the treatment was stopped.

I was then visited by another doctor who asked me if I'd caused the symptoms myself by using drugs. I was very upset and frustrated by this and felt the hospital had adopted a patient blaming approach because they couldn't agree on a diagnosis. I was sent home again and told to wait for a neurology outpatient appointment. I was still unable to walk safely and had become double incontinent due to the complete loss of feeling in my lower body but wasn't given any advice or walking aids. They didn't seem to care if I'd be able to care for myself once I was home.

I had just arrived home an hours drive from the hospital when I got a call from the nurse asking if I could go back because they had forgotten to give me the pain medication recommended by the neurologist. A week later I presented myself back at the hospital as numbness around my ribs had changed to a tightness and I felt my breathing was restricted. I had to wait in A and E for 5 hours and go through the whole admission process again. Once back on the ward I was visited by another doctor who asked me if I'd been researching the GBS online. I felt he was implying that I was either imagining or fabricating my symptoms as nothing had shown up on the MRI. At this point I just wanted to go home. I felt like a naughty child being frowned upon for telling tales. I was given several more blood test and booked in for another MRI. The second MRI was done with an injection of an enhancing agent and this time it showed an area of inflammation in my spinal cord at the T4 vertebrae. The consultant came to my hospital bed and announced we have found some inflammation in your spinal cord, it's called transverse myelitis, there's no treatment or cure. This is a lot to take in so I'll come back to see you later.  He then left, leaving me in a state of absolute shock wondering if I would stay this way forever. As I sit in my hospital bed making a mental list of The questions I wanted to ask, a nurse arrived to discharge me and I didn't see the consultant again.

I have been at home for 8 weeks now and having physio twice a week while waiting for a neurology appointment. Previous to this I was working 5 days a week with children and volunteering on the weekends. The most difficult part has been going from being such an active person to being totally housebound overnight and having no professional emotional support to help me adjust. I felt that the hospital was in such a rush to get me out they didn't care what happened to me afterwards.