Raising Awareness for Transverse Myelitis

Recently it was asked on a Transverse Myelitis forum whether we should raise awareness of the condition. Most answers where that awareness needed to be raised with doctors more than the public. Many doctors have never even heard of the condition so what is the point of the public knowing.

I believe it’s like a circle, the more people you educate then the more doctors will learn. It’s hard to persuade a doctor that there is something wrong with you when it doesn’t fit neatly into any of their normal criteria, but it’s not impossible. I know this from experience.

When my daughter was having problems with her neck we knew for certain that it wasn’t a traumatic cause.

People get confused with the term traumatic, often anything involving a hospital visit can be considered traumatic mentally, but in a doctors terms it means caused by an accident, a fall or similar. My condition is called non-traumatic but it has given me tons of trauma to deal with.


My daughter did not fall or hurt herself, but her neck was twisted out of shape and the discs in her spine had moved. One was fractured but that was caused later by the twisted discs rubbing against it and wearing it down. Throughout most of the two years of my daughter’s treatment her consultant insisted it was a traumatic injury, he would not accept our pleas that it wasn’t. Eventually WE persuaded him and he sent us to a rheumatologist who confirmed that my daughter had a problem with her connective tissues and it was possible for any of her bones or discs to move by themselves, without involving a trauma/accident. He consultant now has non-traumatic in his notes. We changed his mind by persistence.

So, going back to the original question. If we educated enough people about our condition then maybe this too would spread to doctors.

I was one of the lucky ones, I ended up in a hospital with one of the few consultants who dealt with my condition and gave me the correct treatment straight away. Without it I may not be able to walk at all now. How scary is that? The truth is there are people out there with Transverse Myelitis who have been misdiagnosed, not received the correct treatment and often left in a much worse condition than they need be.

The first doctor that examined me at the hospital believed that I had Multiple Sclerosis. The trainee doctors (that visited me daily on the ward) believed I had another condition, Guillian Barres Syndrome. I could have easily been mis-diagnosed.

Transverse Myelitis can present itself in many ways and affect different parts of the body. The main cause is the demyelination of the spinal cord caused by inflammation. The demyelination is called  a lesion and can happen on any part of the spine. The body can be affected from any part below the lesion, so if it’s in the lower back, then the legs can be affected, if it’s in the neck then all parts of the body below the neck can be affected. The lesions can also be found in the brain and the eyes can be affected. It’s a complicated illness that is very difficult to diagnose. Or, it can be easy to diagnose by a doctor who has heard of it!

The effects of Transverse Myelitis can be sudden or slow to appear. Some people have minor problems for years before they are diagnosed. Others, like me, can have drastic symptoms appear in a matter of hours.

I have decided that I want to help raise awareness of Transverse Myelitis in whatever way I can, including using my blog as a platform. You can already read my story so far by clicking the Transverse Myelitis link at the top of the page.

My first tip would be…

Don’t ignore pins and needles! Pins and needles are common and occur anytime you have not moved a limb for a long period of time, or have been sitting or leaning on it. Most people feel them quite regularly. However, if you are getting severe pins and needles that last for a long time and become more of a nuisance then they could be hiding something more serious.
When I had my pins and needles that wouldn’t go away they felt so bad I called 111 for advice. They sent an ambulance straight away but I refused to go to hospital with pins and needles as a symptom. Then they started to spread through more of my body and I knew that wasn’t right so I gave in and went to hospital. I arrived just in time.
 The pins and needles where a symptom of my spinal cord being inflamed and I was left paralysed from the waist down and with very little sensation in my arms. After an MRI and Lumber Puncture I was diagnosed with TM and given steroids by IV. This helped me a lot and by five days I was back on my feet. Although I did have to learn to walk again and I still can’t walk properly now. If I’d not been treated properly the inflammation could have continued to damage my spinal cord and I may have not regained the strength in my legs and arms until much longer, or possibly never.

I hope that with more people knowing about this condition that there will be less mis-diagnosis and the correct treatment administered quickly.

IN the meantime, I’ll still enjoy my life with my family 🙂

I’d like to add a big shout out for the those with TM who are competing in the Paralympics.

Gordon Reid – Tennis
Natasha Baker – Dressage
Lauren Rowles – Rowing
Phil Pratt – Basketball