Tag Archives: MS and cognitive issues

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 or  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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Whether the Weather …

Most people have a preference for one season over another, or one kind of weather conditions over others. ‘Good weather’ can mean different things to different people, depending on what they like …

Most people with Multiple Sclerosis (MS) have more problems with handling the heat than they have with cold weather. Higher temperatures usually mean MSers stay indoors with the air conditioner going, and if they have to go out, they have air con on in the car and head for air conditioners or at least shade wherever they have to go. I’m certainly one of those people.

aleppo pine

If the temperature where I am gets up over thirty, I usually start to feel weaker and a bit ‘muddle-headed’. My memory is affected and I feel unable to think properly. Having a cool drink, and cooling myself down in some way is needed before I begin to feel more ‘normal’ again. I know all of this and I do my best to make sure it doesn’t happen to me, so I keep an eye on weather forecasts and generally I stay at home where it”s cool or only go out on hot days when I know the place I’m going to will be cool enough, or that at least cool drinks will be available.

One thing I’ve found is that barometric pressure changes seem to have some kind of effect on me. It’s difficult to describe, but I feel unsettled and weak then too. Stress is probably my biggest thing that really makes my MS symptoms kick in. If something is stressing me out, I feel like I’m going into melt-down, and I have to get out of the situation as soon as possible.

Fortunately I am good at avoiding stress. I have a laid back, ‘she’ll be right’ attitude to life, which, put together to my mostly mindful attitude to things, keeps the stress level low most of the time. Bad things can happen, but good things happen too, and the bad things are rarely as bad as they might have been, so I remember that and stay calm, almost always.

I think this kind of attitude is good for everybody, not just those of us with MS. I’d be interested in knowing how others feel about this … Please leave a comment below: