Multiple sclerosis seems to be everywhere.  They have a front-page news-making “Sydney to the Gong” bike ride every year as a fundraiser, schools run the MS-Readathon so all the school kids are aware of MS, high profile people have it, there are magazines, articles and news stories galore.  And always there is a new story about an imminent cure – or a supposed cure.

So why am I frustrated at having so little information? Real information, I mean – not just good news stories such as “she has been battling MS for years and here is what she still achieves”.  Or that high doses of caffeine in mice can halt and even reverse the effects.

I need to know why it is that all the articles tell you that MS does not significantly alter your lifespan, yet there are innumerable examples of people who died of MS.

I need to know why lots of people have it with only very slow and gradual deterioration over 25 or 35 years – and I am talking about the progressive form now, not necessarily the relapsing-remitting which I know works differently – and yet my Don is in a nursing home unable to sit himself up or even turn himself over in the bed, whereas three years ago when we got the diagnosis we travelled to Sydney by train, took a bus along Parramatta Road, and walked the two blocks to Royal Prince Alfred Hospital to see the specialist, the only aid for Don being a walking stick and the only after-effect being extra fatigue the next day. In only three years!  Why is it that the disease is galloping in his body?  Is it our lifestyle? Diet? Some pre-existing condition that pre-disposes his system to a more rapid onset than others?  Is there absolutely nothing known whatsoever?

I need to know why it is that when there is a new treatment that is still in its early experimental stage, we are not being urged to act as guinea pigs and give it a go.  Because, God knows, we have absolutely nothing to lose.

Such as the new LDN treatment, which I mentioned in an earlier blog, and to my surprise I’ve had a number of quite positive responses to that – all of them telling me of the marked improvement once the drug was started.  Well, the doctor was dubious but said if we were really keen he would give us a prescription – so we are going to try it. Since writing that blog and getting that somewhat tentative agreement from the doctor, our world has collapsed in other ways so we have not pursued it, but I am now determined to do so.

Because, despite the assurances that MS does not affect one’s longevity, I am beginning to think it is a life-and-death matter after all.