I am heartbroken.

For over seven years, I have reported neurological issues. Last year, I finally got hope that we would get to the bottom of this miserable set of challenges when my rheumatology team pronounced me active disease-free regarding my arthritis, clearing the way for neurology to examine me in isolation finally without anyone palming my complaints off as ‘just my arthritis‘ or diagnosed chronic illness.

For background, read this previous post…

Trapped in the ‘awaiting diagnosis’ void

That place between the onset of symptoms and official diagnosis is one of the darkest places someone with a chronic illness will ever go on their journey – the ‘Awaiting Diagnosis Void’.

Keep reading

A year of pain, falls and more

Last year, probably in part due to the pandemic and shielding stresses, one of these ‘episodes’ as I’ve come to call them returned, with a bang. With the great news from my rheumatology team, a unique opportunity presented, so I pushed – harder than I have ever pushed for answers in my life. I got through some pretty long and dark days with this hope – hope that I would finally know why my hands and feet randomly went numb or felt like they were in scolding water, why I would get hit with waves of fatigue that would floor me, cause me to fall down the stairs and walk into door frames. Why I embarrassingly had toilet accidents that I never felt coming or answers to why I had to pull over at sides of fields in the middle of nowhere with my crying son as I was suddenly not safe to drive.

So when I got reassigned to neurology (for the third time), I thought this would finally be it. I was slightly disappointed when the neurologist said I didn’t have a separate ‘neurology’ file and that everything was bundled into one – and I mean bundled. I always know when I am next in line to see the consultant as few rival my pile of notes on the metal clinical tray outside the doctor’s door, resembling something as big as a pile of Sunday newspapers and just as frayed and tatty as the previous week’s unsold ones, held together by string these days given there aren’t elastic bands large enough.

Nobody’s joining the dots

The neurologist knew little of my previous concerns, raised over the best part of a decade as these episodes came and went. I found myself deflated as I tried to condense years of experiences into the few minutes of precious time I had with this man—this stranger for who so much depended on. The deflation was exacerbated as he clearly picked and chose what he was interested in – for example, the life-altering stuff that most impacted my daily living, such as the fatigue and falls, barely registered. In contrast, the numbness and pins and needles clearly pricking his ears for the few moments he would spin from his default position of back to me taking notes to actually making brief eye contact and listening without multitasking on what I was saying.

The repetition, the cramming in of information, pointing out ‘I’ve already had that test‘ numerous times and carefully choosing what to and what not to say for fear that I would lose his interest or sound simply crazy from the depth of symptoms and experiences, was exhausting. However, hope was restored when he said he would create a separate ‘neurology file’, go through all my notes, and press on with a brain MRI after another nerve conduction study. At this point, he made no secret about his theory – Multiple Sclerosis (MS) or possibly biologics-induced MS. I was shocked. He said it so casually. I had no idea that my arthritis treatment could even do that. He also seemed so sure. Sure enough to mention it without any tests, anyway. I left after what seemed like a whirlwind few minutes, confused.

Back on the scrapheap

Fast forward a couple of months, and, as expected, the nerve conduction study test came back clear, just as my last one had several years before, indicating that the issue was central rather than at the peripheral nerve level. Even the clinician conducting that test said beforehand, ‘with those symptoms, this will be clear, you really need that MRI‘. I had the brain MRI, which unusually was a test that I hadn’t had before after years of neck and spine MRI’s and even a brain CT scan after one of these episodes previously caused a migraine so severe they thought I might have had a stroke. I had the MRI, and I waited.

After a painfully long three weeks, in which I had managed to convince myself a full 360 degrees of possible outcomes – from ‘oh, I heard nothing in the first week, so it can’t be that bad‘ to ‘it’s been too long, it must be complicated‘ I received one of the most disheartening and infuriating letters I have ever received from a doctor:

MRI brain 7 February 2021 is reported normal. There is no radiological evidence of CNS demyelination.

Investigations have not established a cause for Mr Nelson’s symptoms. I have not arranged to review Mr Nelson but if he has new or progressive neurology, then please re-refer.

That was it.

So after a year of waiting since this new episode began, just one 10 minute consultation and two tests (one being a repeat), I am back on the scrapheap. To wait for my condition to worsen or for new symptoms to appear on top of numerous others. All because, in my opinion, a doctor had a theory and quite rightly tested for it; however, when that theory came back as false, the investigation stopped. Why?

What should have been a good news day (normal brain scan) was turned into a terribly negative experience. This has happened before, of course, in the two or three previous episodes of whatever this issue is; however, the difference back then was that the flare and symptoms passed – on this occasion, the problem is just as impacting to my life as it was a year ago and, unlike the previous episode around 4 years ago, I am a parent now. These issues don’t just pose a risk to me. In summary, it felt like a frigid way to deal with another human being. Like breaking up with a teenage lover with the words ‘it’s not you, it’s me‘ – it tells me nothing whilst also having the power to shatter my world. Destroy my hope.

Where does this end?

So what will it take for somebody to take a look into my situation again? Speaking with my GP yesterday, it’s clear that neurology is now a dead end. He suspects it’s more autoimmune/rheumatic in nature anyway, that or some form of Complex Regional Pain Syndrome (CRPS), although I’ve never heard of that, personally. So, after all this time, it appears I am back knocking on rheumatology’s door again – which is ironic considering the last time I saw my rheumatologist in the summer of 2020, he mentioned that my condition, psoriatic-associated juvenile idiopathic arthritis (Pa-JiA), could continue to evolve until I reached my mid-40’s, right before telling me the issues I was reporting were neurological!

As I explained to my GP on the phone, ‘no established cause’ doesn’t mean no problem. Every day this issue impacts my life when active, far more so than the arthritis I have lived with since I was a child. Some days, I am scared to drive, have to set trackers on my phone when walking alone across fields, carry my son up the stairs on my backside when my foot is numb, take ridiculous levels of pain relief just to get to sleep some nights when the electric shock sensations in my fingertips are too much. So regardless of ‘established cause’, there is a clear and obvious problem, and I sit here today wondering what it will take for somebody to retake an interest and get to the bottom of this once and for all. A bad fall where I break something? A car crash? To be found facedown in the mud by another dog walker – worse?

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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