music, opinion and technology

dodging a bullet

with 5 comments

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.


Written by brian t

August 28, 2006 at 9:48 am

5 Responses

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  1. What makes yours MS Benign btw? And which is the drug that has been launched for testing this year Tovaxin or something like that?


    September 18, 2006 at 7:31 am

  2. Hey There!

    I clicked on the “next” button in the corner and landed in your World. I have RR MS and happened to read about you and then the name made more sense to me (I recently had a 5-day dose of IV steroids), but I bet it’s a different play on words!

    Anyway, if I find you again, I’ll stop and say hello!

    Take care,



    September 21, 2006 at 7:46 pm

  3. My foot sliding off the brake pedal 25 years ago was the first sign. Since then it’s been a series of attacks involving many of my normal body functions, crippling weakness, loss of co-ordination, altered vision, affected speech, loss of sensation, hyper sensation the list goes on.

    An MRI many years ago, depicted ‘numerous lesions’. Life was made difficult to be certain. But I never ever allowed myself to lose hope

    I feel the turning point was 1 immune gamma globulin treatment years ago, I just felt better immediately and thought I had turned a corner. The new drugs were never an option . They came around long after my diagnosis. I took rehabilitation to heart and ten years ago, beginning with one lap reignited my love of swimming.( A cool pool makes the difference)

    Today, I’m symtomn free, certainly


    June 15, 2007 at 2:31 am

  4. Since this post, a lot has happened: I’ve just completed the screening tests for the FTY720 (fingolimod) Phase III trial, now I’m waiting for the go-ahead to start the trial.
    Swimming? I wish. In Dublin weather, pools must be indoors, and the only one anywhere near me belongs to an expensive gym.
    PS: this site name is over 5 years old, dating from long before I had even heard of multiple sclerosis; The only steroids I’ve ever used was in some hydrocortisone skin cream, long ago. It was just a made-up “brand name” I thought was fairly unique.

    brian t

    June 15, 2007 at 7:54 am

  5. It’s been 30 years since the diagnosis was made. I’m still doing very well, neurologist says I’m a lucky man, and I would have to agree! Life is still holding together, Health is everything.


    February 19, 2010 at 10:48 pm

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