Tag Archives: ms research

Specialist Visit Tomorrow

When I visit this specialist, we’re talking about the chronic illness I have that most disables me, of course, Multiple Sclerosis (MS). This person has been my neurologist since I first knew I had MS, because he is the person I was sent to by my own GP, when I had the results of the CT scan that indicated something was wrong, but more information was needed.

This neurologist, or ‘my neuro’ as I now refer to him, sent me off for another test – an MRI scan. When I visited him again soon after that, to talk about what the MRI revealed, he told me I had MS, and that was it. We talked about what that meant, I think, but we talked most about which medication I would take. This was back in 2010, and the options for medication were the choice of injectable medications, or monthly infusions. (I could be wrong, that may not have been an option, can’t remember).

I chose the needle to happen weekly rather that daily orĀ  every other day, or every three days, and there it was, I was on a regime of injecting myself in the thigh muscle on the weekend, every weekend presumably for the rest of my life. I wouldn’t have thought, previously, that I could have done that, but it turned out I could do it, and I did it for two years, rather than for the rest of my life.

After regular visits to my neuro, (and my own following of the medical news regarding MS) I learned of the arrival of a medication I could take via a daily capsule, rather than one via a needle. There were some issues to be aware of, and tests and checks to have done first, but the thought of this wonder drug was marvellous and I jumped at the chance of saying ‘No, to the Needle!’

So I went through the required protocol, had my heart checked, and my eyes examined (macular), everything went well and so Gilenya came into my life. This medication went well for me and is still going well, some six years later. I have blood tests done reasonably regularly, to check whether everything is going well (it is), and I see my neuro, to basically talk about how I’m going, and marvel about my good health.

But there are new drugs available, more and more all the time. Perhaps we will talk about them. Or we may discuss my most recent blood tests, and, well I’m not sure what else. I had mentioned possible cognitive issues, the last time I saw my neuro, some four months ago, I think it was. He did a bit of a test to check out that, and was happy to tell me I was cognitively 20/20 or something like that. He may have pointed out that I wasn’t getting younger, and that was normal, I’m not sure.

Anyway, this neuro visit will happen tomorrow, and I will report back on what happens, which I assume will be nothing much at all really, but time will tell. I probably should think of some questions to ask, but what? Who knows. Perhaps I’ll search the internet to see if I can come up with something, but maybe I’ll just leave it all up to him. After all, I may have the lived experience, but he is the expert …

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Multiple Sclerosis Cure! Not

When I see yet another ‘cure’ for MS, I don’t get excited and I don’t rush off to get myself whatever is the new contender in the MS Cure race. I usually shrug and continue on with what I was doing. Is there a cure for MS in the future? Probably. Will it happen this year? Probably not.

The problem with these so called cures, is that the time from the initial discovery, to the final pill or potion that will cure those who have whatever it is a cure for, that time can be many years before this so called cure actually hits the market, when sufferers can be cured. The most recent one that came to my notice on Facebook looked slightly better than some of them I’ve seen.

But even with it looking slightly better, in that there is a reputable university involved in this ‘cure’. But that university Cambridge) is at the stage of looking for funding to help further develop the idea, and they don’t even expect to begin actual trials until 2020, which is three years away. So no, I’m not holding my breath as I wait to see what the results are.

And curiously, Cambridge University also seems to be doing work on Stem Cells, another ‘miracle cure’ for MS so I’m wondering whether the two so-called cures are going to run into troubles over which ‘cure’ is actually a cure at all. Am I skeptical about these things? Yes, of course I am. What thinking person wouldn’t be skeptical?

If I got over the top excited over every piece of whizz bang miracle that came out, I’d quickly run out of puff. The internet brings us ‘amazing’ things all of the time. Today I saw the miracle ‘black lion’ one again. This black lion supposedly is black because of the melanin in its body doing something or other, and making everything black instead of the more usual colours. The truth is that the miracle is in the work involved in changing a picture of a white lion, which is actually true, into a picture of a black one, digitally changing the colour. Clever work, but not a miracle at all.

I like science quite a bit, and I’m open to the idea that amazing new things can happen, but the more I see quackery and cons, the more I tighten my skeptic hat, so it sits firmly on the top of my head … Birds are miraculous, baby creatures of any species are miraculous too. And ideas and medical breakthroughs can happen too, I accept that. If someone looked at me, and the way MS is for me, that may even be a miracle, you never know!

I’m not in a wheelchair, I can get up and run, I’m not blind, I have reasonable muscle tone and I’m able to do things that most other people can do, what a miracle! Well, not really, I think I’m just lucky that my medicine works for me, and my lifestyle isn’t too arduous for me. If everyone with MS was able to do whatever they truly wanted to do, we’d probably call that a cure, that’s what works for me!

Does anyone have thoughts about these so-called cures, leave a comment, I’d love to read about it!