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Jason

When I woke up one night in November with a severe headache, I thought nothing much of it. I took paracetamol.

Nothing seemed to get rid of the headache though and it was a bit annoying. This went on for two weeks then suddenly the headache went. I felt a bit under the weather but nothing that I took seriously.

Gradually though, over the coming weeks, I started to feel cold, then hot, irritable, short tempered and I starting to go off food (which was unusual for me).

Christmas time came and I was getting worried. I didn’t know what was going on. I built up the courage to ring my doctor and tell him my symptoms, he sent me for blood tests. I was told to return if my condition worsened. Two days later I was back at the doctors as I was not eating, the thought of eating food make me sick, and I was losing weight. The doctor didn’t know what was wrong as my blood tests came back normal apart from the COVID-19 antigen test which came back positive.

I was told I probably had long-COVID, but I wasn’t happy with this as the symptoms I was having didn’t seem to match. I mentioned to the doctor that I had TB when I was 18 months old and the symptoms seemed very similar.

The doctor rang the TB clinic for advice and they said they wanted to speak to me the following day. I was spoken to by a TB nurse and she told me I had to come in to the clinic straight away where I was sent for an xray. When the consultant looked at the xray, I was told that it didn’t look like TB but to be on the safe side I was sent for a CT scan. The scan did show TB.

I was admitted to hospital for four days and given all sorts of tests. I was given medication and sent home on the 4th day. The following day I was home visited by a TB nurse, she was talking me through the medication I was given. My wife mentioned to the nurse that I was acting and walking strangely. The nurse asked me some basic questions then suddenly said she was referring me back to hospital straight away – I was having a stroke!

I was admitted to hospital in early February. I had another two strokes and there was a point where the doctors contacted my wife to say that they didn’t think I would make it. I was diagnosed with TB meningitis – TB around the brain or spinal cord. I was in hospital for a total of 12 weeks and I have no recollection of the first three.

It was hard because I couldn’t see family because of the covid situation. It was especially hard for my three children as they thought I would die in hospital and that they would never see me again. My wife was amazing. She had just lost her dad and we were moving house and also home schooling. Now she also had the worry of losing me. She stayed strong for us all, I know how hard she had it.

My whole family had to go through tests for TB. The children had a TB vaccine. When I left hospital, I had lost three and a half stone in weight and I suffered muscle wastage. I was very weak and awfully tired. I went back into hospital four more times for a week at a time.

I was referred to a speech therapist as I had memory loss, speech difficulties and frustration about what had happened to me. I was off work for nearly 12 months.

I came to the end of my treatment in February 2022 after being on eight tablets a day for 12 months. I want to say a massive thank you to my GP and all the TB nurses and consultants who treated me. But the biggest thank you goes to my wife who nursed me through this terrible disease.

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