Three or so years ago, I was sitting in a North Wales regional meeting of the UK’s MS Society and distinctly remember a society staffer saying that everyone with multiple sclerosis had a right to see a neurologist. If we wanted to see one, we only had to ask.
Well, in my case, I had not seen a neurologist for years having been transferred from him to seeing a specialist MS Nurse, had only ever had one MRI scan and that was prior to diagnosis in 2002, and had only ever been told that my MS was ‘benign’. In fact, at diagnosis the neurologist said that he did not expect my condition to deteriorate any faster in the future than it had in the previous 25+ years.
If I wanted to see him again, just tell the MS Nurse, I was told.
As is MS’s way, it did get worse and three years ago I was seeing the North Wales MS nurse every six months. So, on my next visit to him, I asked to see a neurologist. His reply was to ask me what good I thought it would do.
My reply was that I’d like to know exactly what type of MS I had and to discuss any medications he might think should be prescribed for me. The nurse’s reply let me speechless, not something for which I am known. He said that I had had RRMS but now had moved on to SPMS and that it was unnecessary for me to see a neurologist as there was no medication suitable for me.
Let me remind you this was a nurse, albeit a Specialist MS nurse, telling me what sort of MS he thought I had – without any further tests. It was just his opinion, and he blocked me from seeing a specialist doctor. Fortunately, this particular man has moved on now and North Wales has a new MS nurse.
Having moved from the UK to Spain, I now have to ask my new GP to refer me to a neurologist here. Maybe, I’ll now get a second MRI – 14 years after my previous one – and even find out exactly what type of MS I have.
Watch this space for further information.