dodging a bullet
It’s been a while since I’ve had anything to say about Multiple Sclerosis, mostly because nothing has been happening on that front. There’s a small chance that I’ve been misdiagnosed, but I know that that the MRI results and the symptoms I have still point that way. The only other known cause for nerve damage of this type – pernicious anaemia – was ruled out by blood tests.
What I have is best classed as “benign” MS, and while the symptoms continue to fall into the “annoying” category, they aren’t going away. I’m not quite as steady on my feet as I used to be, and find myself taking extra care around the home and office. On the other hand, it’s not stopping me walking to and from work, which puts about 32km (20 miles) on my shoes per week, and often more on weekends.
Benign MS is not getting as much attention as the more severe forms, which is quite understandable, but a new research paper from Italy is informative. Full details are here, but the opening and conclusion are the most reader-friendly part, which I will quote from here.
The trend to start disease-modifying therapy early in the course of multiple sclerosis makes it important to establish whether the benign form is a real entity. In previous studies, measures of magnetization transfer (MT) ratio (MTr) have been shown to provide good estimates of the amount of tissue damage occurring in multiple sclerosis brains. Thus, with the hypothesis that if benign multiple sclerosis patients were really benign, sensitive measures of subtle tissue damage would be less pronounced in these patients than in very early relapsing-remitting (RR) multiple sclerosis patients.
We carried out conventional MRI and MT imaging in 50 patients with benign multiple sclerosis [defined as having Kurtzke Expanded Disability Status Score (EDSS) ❤ and disease duration >15 years] and in 50 early RR patients selected to have similar disability (EDSS <3) and short disease duration (<3 years).
We conclude that lesional and non-lesional MTr values can be significantly less pronounced in benign multiple sclerosis than in a cohort of RR patients at their earliest disease stages, suggesting that brain tissue damage is milder in benign multiple sclerosis than in early RR disease. This can be due to an extraordinary beneficial response to demyelination of benign patients and may represent the evidence that benign multiple sclerosis truly exists and might be differentiated from other forms of this illness.
The part that speaks loudest to me is the choice of patients who have had benign MS for more than 15 years. Other sources I’ve read stated that benign MS was a temporary phase that would almost inevitably lead to RR or Progressive MS. If there is a significant population of people who have lived with benign MS for 15 years or more, that is definitely a positive sign for me. In particular, if what I have can be medically classified as benign MS, and it is recognised as a separate condition that does not inevitably lead to disability, that should serve to allay the concerns of potential employers. I need to do more research, and consult my famous neurologist again.