Thursday, June 5, 2008


In the mail yesterday were two newsletters about MS. One was MS Life, produced by the MS Society in Qld and the other was the newsletter of MS research.

One of the articles in MS Life was about someone who was diagnosed 4 years ago and is now on Beta Interferon so I thought I'd check what this particular drug does. This article explains that Beta-Interferon does a similar thing to the Tysabri in terms of strengthening the blood-brain barrier and it also claims to reduce inflamation. The article doesn't mention how effective it's proving to be but I recall reading elsewhere that it's not hugely effective, although it's all speculation as I explained in my original post.

After I read the research newsletter as well I came to the conclusion that the system has been largely set up to deal with the worst cases, not to provide useful information for the majority of us who are generally well most of the time. MS Life says that every day 3 young Australians are diagnosed with MS. What are their doctors telling them about how to deal with it? Are they being frightened into taking Beta-Interferon from day one? Are they being advised to take up an exercise program to maintain their muscle strength, or are they told to rest and take it easy instead?

Many years ago I used to go to the Dutton Park centre (in Brisbane) to attend the monthly meetings of People with MS. I did this for a number of years and a lot of the members at the time were self-injecting Beta Interferon, convinced that they were better for it. It was my observation, however, that over time they became foggier in their mental acuity and I became convinced that this was more a function of the drug than of the MS itself. It was during this period that I was experimenting with ice skating and having positive results so I explained this to the members on a number of occasions. Noone else seemed willing to try it for themselves so I stopped going to the meetings and continued along my own path.

F5m is an organisation that's aiming to raise $5million for MS research and according to the newsletter their tally is $1.8million to date. That's all well and good but any results they're likely to achieve through the research are not going to help the 3 young Australians who were supposedly diagnosed with it today..or yesterday..or tomorrow so it's really up to the individual to decide what to do and how to manage the disease.

In my view there are clearly two options; either to start down the slippery path of drug therapy, as I'd guess most neurologists are recommending, or to join a gym and maintain a high level of physical fitness to be able to cope with any possible adversity. I guess there's a third option - to do both, but that may involve the side effects of drug therapy, not good for overall well being and therefore contra to the fitness idea.

If you were to become one of those 3 young Australians tomorrow what do you think you would choose to do?


Unknown said...

Hi Lena, thanks for your post. Many of us out here need inspiration. I was recently diagnosed after perhaps 15yrs of symptoms and as many doctors. Following the obligatory steroid bomb my neuro insisted on Betaferon. I have never felt worse in my life! I stopped just over a week ago. The fog has lifted and I can actually walk again! I had thought I had progressive not RR. Will have to deal with the aftermath at my next appt. Will never go back. Diet and exercise without a doubt are the key.
Cheers, Vicki

Lena said...

Hi Vicki, Congratulations for choosing to do something that many others are fearful of! Too many times we think that specialists know better than we do about our wellbeing. No one else can live in your skin and think as you do, so how can they possibly know what will work for you?

I'd like to suggest something else to add to your diet and excercise routine. Optimism. The better I feel about things, the better my body feels. Whatever is happening for you (and I don't just mean about the MS) be aware of how you're feeling and always think yourself into a better feeling place. When I'm feeling particularly negative I choose to do something I especially enjoy to bring me back up to a happy state. It works for me.

Stick to your resolve and stay well. All the best.