I’ve been chatting to MSers all over the country since my last post about MS labels and MRI scans.
It seems that MSers are getting varying degrees of information from MRI scans across the country. This doesn’t come as a huge surprise as the news is awash with stories about the NHS and how your post code can determine the standard of care you receive.
Don’t get me wrong though. I love the NHS and you can’t fault the standard they provide in A&E departments up and down the country but those of us with chronic conditions that require years of care seem to have widely different experiences when it comes to the treatment we receive.
I was diagnosed with MS in 2008 following an MRI scan. I remember the technician looking at me sympathetically after the scan and asking if I had long to wait for an appointment with my neurologist. Looking back, she must have seen what was lurking on the scan and was concerned I’d have ages to wait before the bomb of a diagnosis was dropped on me. This highlights how much scans can show us about our condition and what’s going on in there.
I didn’t have another scan till 8 years later when I stamped my feet, threw my toys out of the pram and demanded to see an MS specialist. I then had another a year later so I can now clearly see my MS is “stable” and not progressing alarmingly.
This is important to me as I feel more in control and can feel some hope that lifestyle choices I’ve made may be making a difference. Hope is always important with a condition such as ours as it can give us the strength to pick ourselves up and carry on.
One MSer told me her neurologist won’t offer her MRI scans now that she’s stopped taking medication. How will she know if she needs to go back on them then?
Another has only ever had one scan in 2006 so I’d hate to think what’s going on in his brain. Maybe he’s happy to be ignorant though as no new is good news!
Another MSer told me she had to demand the most recent scan and that sometimes you need to ask rather than wait for the neurologist to take the lead.
People who have the most regular scans seem to be those who are on medication and need careful monitoring. This would make perfect sense to me as some of the new generation of medication can have nasty side effects that can’t be sniffed at.
I’d love to know what MSers think. How many scans do you have and are the results communicated to you?