Living with CIDP: Diagnosis

‘Your feet are icy, stop wriggling!’

‘I can’t help it, I’ve got pins and needles again.’

I didn’t know it, but almost four years ago, these were the first symptoms of CIDP. I put the persistent numb feet down to my boyfriend’s crumbling cottage and the lack of central heating. And sure enough, by the time the spring had arrived, the symptoms were gone.

There were other signs of a problem over the next few years. I had bouts of my hands feeling swollen and achy, which were dismissed as carpal tunnel syndrome. After an energetic Zumba class, my toes would feel like they were on fire, but I put this down to wearing ill-fitting trainers.

None of these things lasted for long enough for me to make it to my doctor about them. So I didn’t worry too much. I was in my late 20s and otherwise in good health. As a working single mother, I didn’t have time to be ill.

Things took a turn for the worst on on August bank holiday weekend 2013. I was walking up a hill in Yorkshire after an afternoon sojourn to the pub. As we walked back, my legs began to feel like concrete. I noticed that I couldn’t feel the soles of my feet, and my ballet flats slipped off without me noticing. I felt a lot more tired than usual, and vowed to go to the doctors when I got home.

Over the next fortnight I deteriorated rapidly. I had just begun a new job, so managed to drag myself to work each day. I had to make sure that I was first in the bus queue, because my legs felt too heavy to climb up the stairs to the top deck. I dreaded meetings as I couldn’t carry a tray of drinks and my hands shook when I tried to write. I stupidly took myself to a music festival, where I found myself unable to walk unaided by the end of the day and having to be pulled up steps by my friends and family.

I was initially diagnosed by my doctor with glandular fever. I was sent home and told to rest. Two days later, I was weaker and returned to the doctor’s office. This time a junior GP suggested writing off for a neurology referral and sent me home to rest.

By this point, rest was all I could do! I couldn’t walk between the floors of my house and had to pull myself up or scoot down the stairs on my bottom. Part of me expected to wake up one morning and all of the symptoms be gone. In fact, was it all in my head? Do arms and legs just stop working?

The third GP to see me immediately referred me to a neurologist. He’d asked me to climb up onto the bed in his office, via a small step. And although I could place my foot on the step, I was completely unable to haul myself up. It was as though all of the muscles in my leg had just switched off.

A neurologist took one look at me and told my partner to take me to the neurology ward of the nearby hospital. Pack a bag, expect to be staying. She also tested my lung capacity, which was a lot lower than it should be.

I fell over in the hospital car park and could not get back up. There was no strength in my body. My legs were just slabs of flesh. I cried when they asked me to get myself up, as all I could do was cling to them and sob that I couldn’t move. I was terrified. I had to be dragged into a wheelchair. I didn’t walk again for almost two weeks.

This was CIDP.

This is the first in a series of articles detailing my experiences of CIDP, a neurological disorder. To learn more about the disease, this is an excellent place to start. For help and support living with CIDP in the UK, visit the GAIN website.