After a few weeks of being at home, I had my first appointment at the Walton Centre. Despite reading up about MS on the internet, it was during this appointment that I really began to understand what was going on and what this oddball of a condition was all about.
I was able to see my MRI scans for the first time and learn what the white spots on my brain actually meant. I remember being told that the brain is symmetrical and should look the same on both sides. The white marks belied this, showing that something was wrong. The results of my lumbar puncture had also helped point towards a diagnosis of MS.
The Science Bit The fluid drawn off during a lumbar puncture is analysed to look for a number of key indicators:
White blood cells: If you have multiple sclerosis, the number of white blood cells in your cerebrospinal fluid (CSF) is usually up to seven times higher than normal. If the count is significantly higher than this, it is likely due to an infection such as Lyme disease, rather than MS.
Neurofilaments: These are fragments of the structural support that normally surrounds your nerve axons. Finding neurofilaments in the CSF provides evidence that your myelin is under attack. If a subsequent lumbar puncture reveals fewer neurofilaments, it suggests that disease-modifying drugs are effectively protecting the nerves.
Oligoclonal bands: The immune system produces antibodies to fight infection. In MS, these antibodies cross the blood-brain barrier and attack the myelin surrounding nerves, leaving antibody levels in the CSF higher than they should be—and higher than levels in the blood (which is why a blood sample is usually analysed at the same time for comparison).
The test used to detect these antibodies is called electrophoresis. A fluid sample is placed on a gel and an electrical voltage is applied, causing antibodies of similar size to group together into visible "bands". One band (monoclonal) in the CSF is normal. The term "oligoclonal bands" refers to the presence of two or more bands, indicating active disease. While this does not automatically mean someone has MS, around 80–95% of people with MS do show oligoclonal banding in their cerebrospinal fluid. (Source: MS Trust)
Seeing what had been responsible for all my problems was an underwhelming experience. The white flecks in various areas did not seem like much, and even the long white mark on my spinal cord looked fairly innocent. Their effects, however, were varied and significant, to say the least. After speaking with Dr Jason Ramtahal, I met another neurologist, his head of department, Dr Mike Boggild.
To receive a clinical diagnosis of MS, guidelines from the National Institute for Health and Care Excellence (NICE) dictate that a person must experience two separate episodes. Jason explained his feeling that I had relapsing-remitting MS. My initial impression was that it would disappear for a while and only strike every so often—at least for the first couple of years.
Less than two months later, I suffered my second clinical relapse. This required another course of high-dose steroids, this time as a day patient over three days at the Walton Centre. My hands were going numb again, to the point where I could not tell the difference between a knife and a plate (which is far from ideal when washing up), and my legs were experiencing numbness and altered sensations. Things began to ease back towards normality within a few weeks, but the key milestone was that this episode officially confirmed my MS diagnosis—almost four years after my car accident.
Looking back, several aspects of that journey made me angry at the time—not least the private doctor who was so dismissive of me in person, and who ignored the initial complaint I sent regarding his conduct. My first letter went unanswered, but he responded to the second after I copied in his Chief Executive. It's amazing how quickly someone responds when you get their boss involved!
In his response, he offered his sympathy for my diagnosis and went on to claim that while he had diagnosed MS in numerous other patients, mine were not "classic symptoms". When I mentioned this to my neurologist, Mike simply replied, "Utter bollocks!"
I knew I was going to like him.
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