My care has been a challenge from the moment I was diagnosed. My parents paid for me to see a neurologist privately, someone recommended by a friend. He was fantastic during my private consultation, taking time and effort to explain MS and ordering further tests to confirm what sort of MS I had.
He agreed to take me on as an NHS patient, but I’d have to travel 20 miles to see him. The difference in his care, when I wasn’t paying for it, was astonishing. He barely looked up from his desk and fobbed me off with a neurology nurse who knew next to nothing about MS and didn’t seem sure why I was seeing her every six months.
In frustration, I asked my GP to refer me locally and I started seeing a fantastic MS nurse specialist. The neurologist I saw seemed hopeless though and it turned out my original MRI scan, used in diagnosis, had been lost. This meant there was nothing to compare a new scan to, but one was ordered anyway.
At no point were results discussed with me, so I had no idea what was going on in my own body
The scan never happened; an appointment never materialised. I didn’t see a neurologist for more than a year and it turned out the one I had been seeing had left, so I was referred to yet another. He ordered another MRI scan, but at no point were the results discussed with me, so I had no idea what was going on in my own body. Was my MS active? How much damage had been done?
While all this neurology “tennis” was going on, I experienced huge relapses and was never sure where to go for treatment. For example, I had a worrying bout of optic neuritis (ON) and went to an eye hospital, but they had absolutely no idea what it was. I had to tell them I had MS and that’s why I thought that it might be ON. The same thing happened with the GP when I went deaf in one ear. I was initiallytold I’d damaged it, but no link with MS was made.
Steroids are used to treat relapses because they shorten the duration and speed up recovery, but I was only offered them once. My balance deteriorated overnight and now I need two sticks to walk. Was this due to a relapse and would steroids have restored some or all of my balance?
I told the latest neurologist I thought my condition had become secondary progressive MS as I don’t have relapses, but have got worse. He seemed happy to slap that label on me without further investigation.
Since disease-modifying drugs are only used in relapsing and remitting MS, those with progression have few treatment options left. This means there’s nothing more that can be done – so welcome to the MS scrap heap.