It’s been another hot and sticky day here but the rain has just started and I am happy because my newly-laid lawn needs it. The lawn is a sign that life is slightly different around here. A couple of years ago it might not have been a stretch to call me a “human dynamo” (or “manic” as those closest to me may have had it!) I was enjoying juggling all the balls: studying medicine, teaching adults, raising children, keeping up with the demands from school (“another costume/cake/donation for the tombola? No problem!”) seeing my friends, keeping up with my hobbies and fighting metaphorical fires all over the place. Today I still juggle but the fire-fighting seems to be beyond me – as long as everything proceeds as expected I can keep up, but faced with a dying lawn and looming summer holidays I was paralysed by the very idea of sorting it out. And so, on the hottest day for years, my retired father booked deliveries of soil and turf and laid the whole thing. In effect he rescued us and I have never really needed rescuing before. Both my body and my brain are slower than they once were and this, on the rare occasions when I dwell on such things, terrifies me a little.
It is a thing that in September 2011 never even occurred to me. I was due at the ENT clinic and was 100% convinced they would do their tests, diagnose me with a balance problem that they could fix and all would be back to normal. The fear kicked in when all their tests were normal and the doctor mentioned the scary word “unexplained.” She grudgingly agreed to send me for an MRI to see if there was something going on in the inner ear but her general advice was “live with it.” I had my MRI and heard nothing back so did just that. Apart from a lingering fear that someone was going to tell me I had ME (I did not want a diagnosis that half the country don’t believe in!) life continued to be busy.
December dawned and the atmosphere at the medical school was one of general panic as the end of pre-clinical phase exams loomed. The final module was neurology which is fascinating but tough; I looked at lots of MRI images with a slightly clueless demeanour. And I received a letter asking me to go for a repeat MRI myself. Just that, no explanation as to why, just that I needed another one. I phoned the consultant’s secretary to ask why and, after promising me repeatedly that the doctor would phone back, she eventually told me herself that the first one had “shown something.” I went for my second MRI three days before Christmas, still in the dark as to why. Now, there is a genetic predisposition of some of the women in my family to melodrama, and my usual optimism (referred to by my mother in the past as “annoying Pollyanna-ism”) deserted me. Christmas day saw me cooking a turkey for the family and sobbing into the saucepans convinced that this was to be my last Christmas as I obviously had a brain tumour that no-one was telling me about.
New Year and I trudged back to see the ear specialist, this time taking Mr C with me to hold my hand. We went in and I saw the MRI images on the screen and immediately recognised the distribution of white bits. The doctor had not looked at them before I had come in and read me the report that said they could be consistent with migraines and told me that amitryptiline would fix me. When I commented that they looked like MS lesions she raised her eyebrows, turned to my husband and tutted “typical medical student hypochondria.” It took a fair while for me to persuade her to refer me on to a neurologist and as we left her office she told my husband that she “guaranteed” there was nothing wrong.
Thinking about this woman now I feel angry. She had missed my original MRI report, she had recalled me with no explanation, refused to answer my phone calls, patronised me and she caused a huge marital row as he could not understand why I was suddenly struck with the utter conviction that I had MS. And it was sudden – I had gone from feeling much better and thinking it was just a case of stress and busyness to a blinding moment of realisation of what we were dealing with. And now I was terrified that no-one would believe me.
Two weeks passed, ironically two weeks in which we were revising MS, and during those two weeks I developed recurrent pins and needles in my feet and legs and my left arm went completely numb. I don’t know now whether this was another “episode” or a psychosomatic response to what was happening but it left me housebound again. Luckily, from the moment the neurologists took over my file diagnosis was straightforward and swift (and following the process for breaking bad news that we are taught) – I met with the registrar for an hour who told me it was likely I had a demyelinating condition, and a week later met with the consultant who told me it was MS. My clinical history and MRI images were enough so I was able to avoid a lumbar puncture, although I needed a longer MRI of my spine to see what was happening in this latest episode. I walked out of his office unable to use my arm or feel my feet but actually happy that I had received a diagnosis – it wasn’t a tumour, it wasn’t ME, it was a disease that people understood, that was well-researched, where there were drugs that could help and a system that would look after me. This positive feeling lasted precisely as long as it took to reach my husband on the phone and tell him…