Ami

Diagnosis: Transverse Myelitis

 Nordfolk, England, UK

At the end of 2016, I began to lose my hearing after a common cold, then in March 2017 I lost my central vision overnight. Throughout the next 5 months, I began having balance issues. In September, I went to see a nurse because I thought I had a UTI. The sample showed a possibility of a UTI, so she prescribed me antibiotics.

I took my first dose just before I went to bed. I woke up the next morning and noticed I was tingling from my fingertips, and it was spreading up my arms. It was a glove-like feeling. I thought I had slept on it funny, so I assumed it would wear off. Throughout the day I was more tired than usual, and each time I woke up from a nap, the tingling had spread further throughout my body. What frightened me the most was when the tingling began in my head. I thought I was having a stroke. I collapsed, and I could not get up off the justify.

After observations at the Accident and Emergency Department (A&E), we were told it was a reaction to the antibiotics and the side effects would ease within a week or so, and then I got sent home. But still, nobody could explain why I could barely walk. A fortnight later, I was still experiencing paresthesia throughout my body. I did go to the doctors, but all they said was that it’s still the same symptoms, they will go soon.

Over the next 4 months, I repeatedly went to doctors with these symptoms and kept being told it’s still the side effects. My mobility rapidly deteriorated. I underwent various tests and MRI’s at the Neurology Hospital in February 2018. I was diagnosed with Ataxia and nerve damage. I came back home, and I was really poorly the following day.

To cut a very long 9-month story short, I will try my hardest to fit it all in the next paragraph.

The day after I was really poorly, I was admitted to hospital. I nearly died after contracting bilateral pneumonia. I was put into an induced coma to give my body a chance to recover (which I did, thank God!). During a physiotherapy session, I broke down in tears because nobody had told me why I had lost my mobility, so I asked my physiotherapist.

“Your spinal cord was inflamed,” she wrote on my whiteboard. This was the best way to communicate with me. So, from the first symptom I experienced back in September 2017, I was told that I have Transverse Myelitis 7-8 months later. Then it all pieced together: I didn’t have a reaction to the antibiotics, it was the onset of Transverse Myelitis.

I think the most difficult part of living with TM is the emotional process of coming to terms with how it affects my mobility and sensation. Especially in the UK, TM is not very well-known, therefore it is more difficult to find support locally.

As much as I am hoping for a cure, I would rather the world knew more about Transverse Myelitis so that they have a better understanding, not just for TM fighters but for families, friends, employers, and so on. I am hoping to raise awareness alongside you all, on my blog, in my community, in the UK. I am getting married in Autumn 2019 and I would like to say something to TM…Transverse Myelitis, you may have disrupted my life this year but I WILL be walking down the aisle to marry the man I love, I WILL share the first dance with my husband. Most importantly, I WILL NOT let you defeat me!


Ami

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