How I Went From ‘Pins and Needles’ to Transverse Myelitis in One Day


New Year’s Eve was peaceful for us. We did the same as usual, enjoyed some snacks, a bottle of wine, and watched “Hoot’nanny” on TV. We were a little subdued as my father-in-law had passed away suddenly the day before. It was a big shock, particularly as I was with him at the time.

I went to bed feeling fine. I didn’t even feel tipsy, just tired.

I woke up New Year’s Day with pins and needles all up my right side. I thought they would go away and got on with my day, busying myself as much as possible to take my mind off them. They didn’t ease, so I turned to Facebook and asked my friend for tips on how to get rid of pins and needles, but nothing suggested worked at all.

Around 11 a.m. I decided to call 111. I just wanted advice because these didn’t feel like normal pins and needles; they were overwhelming and even numbing. After taking my history, they decided to send out an ambulance, which I did not think was necessary since it was only pins and needles. The ambulance came, checked me over and wanted to take me to the emergency room. “But I’ve only got pins and needles!” I cried, “I don’t want to go to the hospital.” So, they left me.

An hour later the pins and needles started on my left foot and I felt them rising through my left leg and starting in my left hand. It didn’t feel right. Sheepishly, I called my brother and asked him to take me to emergency care.

I walked in just before 3 p.m. It took ages to be seen. I went to the bathroom and felt a bit shaky. At 5 p.m. the nurse finally called me to a cubicle, but I couldn’t stand up or walk. While on the cubicle bed I quickly lost all sensation in my arms and legs apart from the pins and needles. I had no strength at all and was paralyzed.

I was taken for an MRI, but unable to finish the scan since I had a panic attack. The next morning, I was given sedation and taken in for another MRI of my head and spine. The doctors informed me they found inflammation of my spine and called it transverse myelitis.

It is a pretty rare diagnosis in the U.K. unless you have multiple sclerosis, which I don’t. I’ve had blood tests and a lumbar puncture to look at the spinal fluid, but so far I have no answers as to why this happened to me.

I spent 12 days in hospital, five of them on intravenous steroids.

The day after my paralysis I regained my right arm, then slowly afterwards my left. A few days later I started to gain strength in my right leg, and 10 days later, a little strength in my left leg. However, the pain is continuous and the pins and needles have not stopped, not for a second. Everything feels strange and I’m hyper-sensitive to touch. The symptoms affect me from the waist down, and in both arms. Never in my life had I felt so awful, but I continued to remain positive.

anne's zimmer frame used for walking and balance. two red bows are tied to it.
Anne’s zimmer frame used for walking and balance.

It’s been three months since my diagnosis and the most useful thing I’ve learned is patience. I’ve learned that everything takes much longer to do now than it did before: showering, getting dressed, preparing a meal, even answering the front door. Most of all I’ve learned patience in waiting for my recovery. I had hoped that I would get better quickly; when I was in the hospital, two to eight weeks seemed like a lifetime. Now I’ve realized the road to recovery is long and slow.

I am so thankful to have found the Transverse Myelitis Society; it has been the biggest support since receiving my diagnosis. I’d advise anyone who finds themselves with this diagnosis to contact them. It’s helpful to find others who understand what you are going through and can answer questions, others willing to share your journey with you and advise you along the way. Many people do not get diagnosed with transverse myelitis right away because it’s such a rare condition. Most general practitioners have never heard of it. You may get misdiagnosed initially; common misdiagnoses include multiple sclerosis or Guillain-Barre syndrome. However, there are tests for these which can rule them out. Sometimes the onset happens quickly, like in my case, or it can be a long and slow attack. It can be caused by a number of illnesses or infections, or it can be caused by nothing at all.

Currently I can no longer walk unaided; I need a wheelchair when I go out. I’ve lost the ability to drive, and everything I do takes much longer than it did before. But, with patience, I’m taking each day as it comes. I feel happier now that I’m home and with my children, even if I can’t physically do as much as I’d like to for them. At least I can speak to them, read to them, and cuddle them. Transverse myelitis is now a part of my life and always will be, even if I do improve.

Follow this journey on Raisie Bay.

The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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