It feels strange to post an update when there’s really nothing to update, but here I go! Some time last year I consulted a neurologist to determine if there was any known underlying neurological cause for my worsening symptoms. I’m sure those of you reading with chronic illnesses will understand that seeing a new specialist is not something you take lightly – the entire process consumes so many spoons that sometimes you have to trade off whether it will leave you better or worse off, health-wise.
I was lucky enough to find a neurologist who was not only the top of his field but who was passionate enough about rural health access he agreed to do a telehealth consult from home.* Despite some technical issues, the appointment went well enough – we were on the same page in terms of testing for possible neurological conditions that are well enough understood to be identified and treated.
Of course, then I had my crash, time sped by in a haze of illness and I suddenly found myself a week away from my follow-up appointment having completed the blood tests but not the cranial MRI. With a combination of luck, willpower and a facilitative radiology clinic, I managed to complete what I thought impossible, which was have another MRI.
I’d had one a few years back, the memories of which are rather unpleasant. So I was beyond relieved to find that the MRI machine here was a newer model which was far more tolerable to be in, and much quieter. If you’ve had a cranial MRI before, you’ll understand my fear of heading in one as a person with sound sensitivities! The staff were so helpful they even managed to persuade the other hospital to release my previous MRI discs, something neither I nor my GP clinic could accomplish.
Unfortunately, my efforts were for naught. The tests showed nothing, and the neurologist concluded (as was his initial suspicion) that I likely do have a neurological condition which causes my symptoms, but our current understanding is too crude to define or treat it. Perhaps, he supposed, we will identify it in 20 years or so.
Disappointing, yes, but the message was delivered gently. I am always grateful to hear the words “I don’t know.” So frequently these conversations take the path of “it’s your fault”, “somatisation disorder”, “see a psychiatrist”, as an admittance of lack of their own omniscience is beyond their reach.
This does leave me in the devastating position of not knowing, and therefore not treating. If you are otherwise healthy, negative test results are a good thing. But as Gabe Moses wrote, “to someone living with unexplained, life-altering symptoms like me, a “normal” test result doesn’t mean I’m healthy. It just means no one knows why I’m not.”
On another note, this experience plus reading other spoonie accounts online of their difficulty accessing healthcare has made me realise just how grateful I am for the healthcare system we have here in Australia. While not perfectly implemented, our universal healthcare system is one of the cornerstones of our nation. I can think of no small number of family and friends who would not be here today were it not for free, accessible healthcare and an extensive welfare system (myself included).
To give an example of how entrenched universal healthcare is in Australia, nearly 80% of GP visits are “bulk billed”, meaning the government covers the whole cost of the consult and the patient pays nothing. A few years ago, the federal government announced their non-negotiable policy of a $7 GP co-payment. The idea was so unpopular it was abandoned less than a year later.
I consider myself particularly lucky that I had a GP and neurologist who bulk billed me, meaning the events I describe above cost me exactly nothing. Even the MRI was free. I remain convinced now more than ever that universal healthcare is a basic human right.
I was actually going to conclude with a update that my health had stabilised some since my last relapse in November. Of course, I then woke up to find I’d been hit by the ME/CFS train. It seems I’m still in the cycle of having a few “ok” days, when I have some strength to go out briefly or do a few jobs, and some really terrible days when I’m dragging myself around by the walls and my speech is laboured and slurred. In neither instance am I anywhere close to the capability I had prior to relapse.
I’ll let you know how I get on in the coming months. For now, hooroo! (As my grandparents would say.)
*Most specialists insist on doing an initial consult in person, whether that means travelling 2-4 hours one way for an appointment or waiting 6 months until they visit our town – and not everyone visits. Then follow up telehealth appointments are held at a local GP clinic, if the specialist deigns to use telehealth, that is. The sheer arrogance of clinicians who insist on a needless 9 hour round trip for a 10 minute follow-up appointment requiring no physical examination astounds me.