Monthly Archives: February 2018

Latest Neurologist Visit

I visited my neurologist yesterday, to find out the results of my most recent MRI scan. He was very pleased with my results, and I am too, really. There is no sign of any new scarring, or any other nasties there, so obviously the Gilenya capsules I take every morning to deal with Multiple Sclerosis (MS) are working, and working well. I am certainly happy about that, and taking the little capsule is much nicer than having to inject myself in the thigh muscle once a week, which was my initial treatment option after I was diagnosed with MS.

The injections, Avonex, were of some help with my MS, but the Gilenya is more effective. So my MS seems to be under control to a great extent, and I don’t need my cane or my walking stick, and I certainly don’t need my walker. My neurologist tested my memory, and my thinking skills, as well as a brief test on the strength of arms, and also tested my peripheral vision, all with good results. This is all very good news. So why, I wonder, do I feel dissatisfied?

My neurologist is thrilled with how I’m going with this wonder drug, he’s far more thrilled than I am. Well no, that’s not really true, I’d hate to go back to being as frail as I was back in 2010, when I ended up going to visit a neurologist for the first time, and so met this man for the first time. I never really took to him, but I certainly don’t hate him. He just seems too flippant, and so sure the medicine he’s put me on is the only reason for my better health,. even though he is also happy that I’m good about having a good diet too.

It’s all a bit mixed up in my head. I’m quite well for my age, especially considering I have MS, and my memory is good, etc, so why does my mind get in a muddle sometimes … Ah well, I think it’s time for me to sit back and just be grateful that I have a medication that is easy to take, and is effective. That will be my plan, be grateful, and stop trying to find reasons to be unhappy about all of this. So Carolyn, don’t be an ungrateful little wretch, don’t worry, be happy!

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Caffeine may Help People who have Multiple Sclerosis

Now this is excellent news, I made myself another cuppa when I read about it today:

Multiple Sclerosis Disability, Fatigue Reduced With Caffeine Intake

https://www.neurologyadvisor.com/actrims-2018/multiple-sclerosis-disability-caffeine-benefits/article/741584/

above the fish pond

This was news from a very learned conference that happened in earlier this year, and anything that tells me that drinking coffee is a good thing to help me with my MS, well that’s a great thing, isn’t it? I love my coffee, and if it’s also helping me to deal with the fatigue, and assisting with my mobility, that’s surely a great thing.

I don’t have a lot more information about these results, but that’s good enough for me for now. If only someone can find great benefits with other things I like, chocolate for instance …

Sitting outside with a cup of coffee and looking at trees and the sky, if only that was good for helping with symptoms of MS! But of course, being at peace, and feeling unstressed is good for all of us, including peopl;e who have Multiple Sclerosis. Being stressed can make my symptoms come back, until I can get over the stress …

Even better, further ‘investigations’ ie, google searching, has shown some more positive information toward caffeine being of assistance for those of us with MS, hooray to the mighty cuppa coffee!

 

 

Not Too Hot & Not Too Cold …

Oh, if only I could find that sweet spot of not too hot and not too cold. Sadly though, I’m going from too cold then too hot and then back to too cold again. I know it’s a little too hot outside or maybe even much too hot, I haven’t been outside for hours, not checked out the outside temperature. I just know how this room feels to right now, and it’s a little too cold …

Ah these first world problems, I have air conditioning and can’t find the just right temperature, when there are people in other towns, or other countries who are dying of thirst, or freezing to death. It’s a sad thing, I’m very aware of that. I give some money to charity – to Medecins Sans Frontieres, every month, and hope my donation helps some people.

Our house has some insulation. It was put in quite some time back, and we are assuming it is still more or less effective. Certainly our air conditioning is effective, keepin us cool or warm, as needed. But as the woman of the house, I prefer the house to be a little bit warm, whereas my husband prefers the house to be a little bit cool. I can always put on some more clothes though, and there’s a limit to how much he can take off. Once you’re down to underwear, that’s about it!

We also have solar panels on our roof, and these help us with some of the costs of our air conditioning. I love these blue sky days we’ve been having, sending down the sun’s power to our panels …

IMAG0087.jpg

The MS I have might play some part in the temperature troubles too, I’m not sure. Sometimes at night when I’m in bed trying to get to sleep, I can feel both too hot and too cold, both at the same time. It might not actually be an MS thing, but that’s what I’m putting it down to. If I shrug and say, oh, that’s just MS, I can just get on with trying to live my life as best I can, pull up or throw off my light blanket, and drift off to sleep.

Many people have big problems with sleeping, but I’m not one of those people. I drift off to sleep fairly easily, and don’t wake up until after I’ve had a good bit of sleep. I have to head off to the loo for a tinkle some nights, but not every night, and can go back to sleep again fairly easily. I certainly don’t have to worry about my home being blown up, or not being able to eat enough food. My life is a good one, a very good one.

So yes, I have MS, and various symptoms that can go with it, but I am living a great life with MS, just a different life perhaps than I would have been living without MS.