Optic neuritis. Go blind suddenly – and fortunately temporarily – in one eye. Ophthalmologist sends me to neurologist. The neurologist tells me in a jovial tone to say that I have had optic neuropathy to insurers – if I say optic neuritis they’d put me down as having MS. MRI done. No follow up.
I wake every morning with pins and needles / numbness in fingers. Go to GP and am told it’s nothing after I raise the MS question.
Still pins and needles in fingers plus shaky jerky hands. Am referred to neurologist who says meh when I raise MS question.
In December I complete wet myself on a bus WITHOUT even realising it had happened until I get off (oh yes, this is a disease where shame must be overcome). GP says meh, bladder infection after I raise the MS question.
Sudden onset of a dizzying array of symptoms from legs – the ones you all know about (pins and needles, prickling, heat, not be able to tell if water is hot or cold on my foot, patches of heat on thighs and hip which come and go etc etc) to needing to wee all the time to dizziness. Go to new GP and miracle of miracles she takes me seriously. Am referred to NHNN (National Hospital of Neurology) after bloods rule other stuff out.
First appointment with general neurology at NHNN. Take with me detailed chronological list of symptoms and possible relevant health issues. Get distinct impression that Dr thinks I’m a bit of a hypochondriac, this is backed up when I get the letter saying that I am taking amitriptyline – as prescribed by lovely GP – for “nerve pain” (her air quotes)
Tests nonetheless follow (PET, CT, LP, MRI with contrast). I get LP and MRI during lockdown by insisting on it.
All symptoms gone, just residual loss of balance left.
June 5 2020
First phone appointment – General neuro tells me, sounding jaunty and jovial, “oh yes it does look like you have MS… nothing to worry about, no active lesions… probably benign” I hang up feeling both vindicated and relieved – after all, benign sounds OK to me.
First MS clinic appointment (phone of course). Consultant confirms RRMS – says benign is patronising (hmm, I liked the sound of benign myself). Says to choose between Aubagio and and Tecfidera and let his secretary know within 2 weeks.
So that’s where I am. Shell-shocked. Choice of drug which has side effect of, among other things, death (Tecfidera) and one which has side effect of the runs, hair loss and stays in system for 2 years (Aubagio) Veer wildly between ‘this is serious’ and ‘wish I’d never gone to GP / ignorance is bliss’. Feverishly look at MS sites and watch Dr Boster on YouTube 👍
Am sent two follow up PHONE appointments, one with MS nurse in October, one with consultant in July 2021. No details of how it works if/when I choose a DMD. Do I get blood test before starting? Do I not see MS nurse until October?
Tearing hair out by now. Husband is already over it / bored / shouting at me that the last week has been nothing but me talking about MS. I’m like, I’ve been diagnosed with a life-altering degenerative neurological disease, and have to make my own mind up between two pretty serious drugs…it’s not me being difficult if I’m talking about it. Sigh.
Thanks for reading this far! Off to see my lovely lovely acupuncturist now (whose partner happens to have RRMS) for some tlc and understanding.
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