My TM Journey

By Claire Field

It was a sunny day. I remember the early morning sunshine pouring in through the living room window shaming me into hooving up all the dust. Typically, the hoover bag needed changing first, so while squinting because of the sunlight I bent down to take out the bag.

That was when it hit. A sharp, stabbing pain in my lower back. It crippled me, leaving me a writhing mess on the floor. I don’t even remember getting into bed, but I do recall screaming that I didn’t want to go to the hospital. I absolutely hated hospitals, even when I knew I needed it I refused to go, and I was still cogent enough to assert my free will. So instead my partner brought over the counter pain meds and I curled up in bed for two weeks.

Though the pain faded a little, other odd things happened. Over the weeks, my legs started feeling numb with tingling sensations running up and down them. I went to the GP, thinking I had a trapped nerve, but he referred me for an MRI instead. It was then that I was first prescribed tramadol for the pain and that eased it a little, yet more and more my legs became numb. Before the end of the year, I was taking gabapentin, both drugs aiding in alleviating my symptoms, yet I still needed to increase the doses of each.

The first MRI showed a little damage in the lower back, but also evidence of damage further up. The GP told me the neurologists wanted pictures of my mid-back, so I went for the second MRI.

“They think something far more serious is going on further up the spine, perhaps in the brain stem, so they want a third MRI, this time of the head and neck,” my GP told me. He also mentioned that they thought it might be MS. That was when it first hit me that this was something truly serious, something I might not recover from. I felt like a deer caught in headlights.

With the MRI, it turned out to be third time unlucky, as they found a lesion in the C4-C6 region of my spine. I was then sent to a neurologist who explained my condition – Clinically Isolated Syndrome. This was what I believed my diagnosis to be, with a risk of developing more lesions in the brain – resulting in MS. The neurologists were undecided on whether or not I was presenting with MS – my oligoclonal bands showed evidence of disease and were positive for inflammation – but I still had no brain lesions, and no other lesions except for the first one. In the end (almost a year after I had my first neurological “event”) I was told I had something called Transverse Myelitis and that my symptoms might improve but it was unlikely.

During the series of MRI’s, between the first and the second, I lost the ability to walk. My legs were too numb and too weak. Since then I’ve had to use a wheelchair and crutches. Fortunately, being in the UK, I got these things for free, though after a bit of a wait.

The symptoms fluctuated, but over time they plateaued, and I was getting by on my drugs and physio. Other secondary symptoms developed – the tendons and ligaments in my wrists became severely damaged due to crutch and wheelchair use, my bladder was retaining urine, I was finding it hard to swallow, I developed Trigeminal Neuralgia, and the pain all over my body was becoming unmanageable – yet I tried to move on with my life, accepting that this was the state of play. I would not get better and would only truly get worse if I developed more lesions because of MS. With this in mind I applied for a Master’s program in Health Psychology.

It was the first time being back amongst “normal” people for four years. I’d only really seen the inside of patient transport and various hospitals between 2012 and 2016. It was the first time doing academics since I’d fallen sick (I had my first episode just after graduating with my first degree). It was scary, thrilling and daunting, but I was finally back on track with my career goals. This was supposed to be a test of my mettle, to see what my body could handle and if I could do something full time. I’m not sure if I passed this test, if I am honest, I think I both failed and passed. I managed to graduate, but I also had a relapse.

It was when I was in the middle of my course between the first and second semester when I relapsed. Again, MS was being touted. I ended up in Professor’s Young’s clinic at the Walton Centre in Merseyside (the second biggest centre for neurology in the UK and one of the best in the Europe!). Again my MRI was clear, but it was also definitely a relapse. Again they were unsure of whether it was MS or TM, but it was obvious that I did not need disease modifying drugs. We’d been trying to conceive so they steered clear of adding drugs they were not sure I needed, keeping me with a TM diagnosis. I was relieved – I’d become used to TM and all its foibles and I felt I could handle a TM relapse. With help that is exactly what I did.

The second semester of my course was chaos, but I found out long ago that I tend to thrive in chaos! I had deferred exams because of the relapse, as well as some other coursework assignments, so I ended up doing semester one work alongside attending lectures and doing the work for semester two! I not only passed everything, but I did so with style in some important areas.

What I think is the most important development I am taking away from my Master’s is the subject of my research. I was inspired by the research the university had done and was doing on pain, particularly the research on gabapentin and other drugs for Fibromyalgia. It spoke to me, and so I decided to focus my research on TM pain. This has led to me co-authoring a paper based on this research as well as putting together a proposal for further research.

In 2017 I graduated my M.S.c in Health Psychology and I did so while doing rehab physio and other treatments for TM. I am currently hunting for funding for my Ph.D. which will focus on researching pain interventions for TM and MS pain.

Transverse Myelitis changed me in fundamental ways, but also for the better in the most important aspects. I’m stronger because of it, more confident about what I can and cannot do and more able to call it a day when I reach my limits (or run out of “spoons”!). I can ask for help, and though sometimes I feel guilty or frustrated for needing help I try not to let that affect me negatively. I certainly have less patience for silly people and stressful environments and I listen to my body more and make more sensible decisions – this includes eating healthier and obeying everything a health professional says!

We are still trying to conceive, still hoping, and I am still pursuing my career goals. In fact, having TM has given me a unique perspective and I am heading into pioneer territory with my investigations. Even if my pain increases I hope to reduce that of others.

That is my journey and I hope I have many more miles to go before it is all over.

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