Tag Archives: lesions

Please Excuse My Brain, It Doesn’t Know What It’s Doing

memoryI was formally introduced to my brain after my very first MRI.

There it was, in all it’s lesioned glory, glowing brightly on the computer screen. I was entranced and tried to take in what the neurologist was telling me as he counted up the little blobs of white amidst the grey.

I used to like my brain and we got on quite well; it saw me through lots of adventures, exams and crises. And Trivial Pursuits. It could always be relied upon to make snap(ish)  decisions or mull over a myriad of options for any given situation.

Lamentably, it has decided to strike out on its own, making a bid for devolution and taking a lot of important bits with it. Now my short-term memory is atrocious. I repeat myself. I also talk about the old days, but that’s probably an age thing. I repeat myself.

I frequently apologise on behalf of my brain and it can become quite awkward. Say I’m standing in front of a huge cafe menu, chalk-boarded behind the increasingly-impatient barista. I am blank. I literally cannot think what to order. Likewise menus in restaurants, shampoos and conditioners in Boots, colours on paint charts and which wrapping paper to buy for Christmas (someone told me it was soon).

I forget the most basic facts so chatting with me can be a journey into charades. I can’t remember names, conversations or dates. I point to stuff, use my hands to describe things and say ‘aggggghhhhh, you know, that, that, um, thing with the spouty bit?’ ‘Oh, yeah, thanks, kettle.’

However, let’s look at the upsides. For one, I no longer brood on things. Drawn-out arguments are a thing of the past. I could have one on the Monday and bounce into work like Tigger on the Tuesday, all forgotten, unless I’ve blogged about it. Then I brood, meh.

But having a short-term memory means I re-experience wondrous things again and again. It’s almost as if every day is new. I get up in the morning and think, ‘wow, what a lovely day! Oh, great, I can have coffee! Wow! And the cat, isn’t she just gorgeous?’ Until, thwack, I veer into the bannister and it all comes rushing back.

That aside, I will continue to count my blessings. I equate it with a computer and how refreshing it can be to delete and send to the trash bin all that junk that’s been hanging around, and that’s got to be a good thing?

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The Ghost of Christmas Past

ghost of christmas past

Mike has written a guest blog post about adjusting to life with progressive MS:

On Christmas eve 2010 I was in hospital for an unrelated illness. I had already been to see my GP about a tingling sensation in my right arm and was waiting for an MRI, so they decided to do it there and then.

Then came the worst Christmas present ever. “You have over 15 scleroses of the myeloma, which indicates you have MS” said the consultant before discharging me to go home for a very uncertain Christmas.

I was 58 years old and had been retired for 3 years. I was driving double-decker buses part time and took part in long distance mountain bike challenges all over the world. Now I drive a mobility scooter with a top speed of 4 mph as I can only walk a few metres, my balance is shot to bits, my life has been completely turned upside down.

That’s the physical side, the mental side is another story. Frustration, fatigue, anger, depression, black holes, lack of confidence, I’ve had them all.

There are many aids available to help with the physical disabilities, mobility scooters, power chairs, stair lifts etc, but the mental side requires a huge amount of self-will , self-management and goal setting just to list a few and this is where I am struggling.

I have a very long-suffering and understanding wife, and Wendy, the MS nurse who is just wonderful. My wife has to put up with my frailties when I fall into the black hole and refuse to talk to her for days and am unable to give any explanation for my behaviour. I get frustrated when I can’t do many of the things I used to do and love – walking the dog, gardening, cycling etc and then become angry, get depressed and the cycle begins all over again.

Over the past few weeks, Wendy and I have been exploring ways of combating these issues and I really do believe with a lot of perseverance and talking to professionals and loved ones, there is light at the end of the tunnel. Dwelling on pre-MS activities and pleasures does not help, but instead looking at what pleasures I can achieve today. Setting realistic targets and reveling in the enjoyment when I achieve them, and always pacing myself to try to minimise the awful effects of fatigue.

Of course, I will never defeat MS, but if I can go some way to combat the pain and misery of that wretched Christmas present of 2010, I am going to give it my best shot.

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By Doing Nothing, I Am Doing Something…

Diana’s my guest blogger today. She writes a brilliant blog  – imtoofancy.com – about everything from Candy Crush to Breaking Bad. She has MS, and for Diana, it stands for ‘mucho special’. I’m pretty chuffed that we’re going to meet up next year when me and The Teenager go to New York…

I was diagnosed with RSRM Multiple Sclerosis on January 20, 2012. Since then I’ve been to five doctors and called two my own.

Every doctor I’ve seen has highly recommend I take medication. I briefly took Copaxone when I was newly diagnosed but after too many faux panic attacks, which are apparently normal, I decided I would rather handle my treatment organically. AKA no medicine, no side effects.

Of course I know that I should at least have a primary neurologist and so I continued on my quest to find a doctor I like. And then I did. She was affiliated with a hospital with a noted MS center. I’m not sure what I was expecting but I walked in knowing that I wasn’t going to be taking medication but hoping she’d still want me as her patient. Of course she agreed with every doctor before her – I should take medication. But I liked and trusted her so much that I promised her I’d that I would consider taking medicine if my MRI showed I had new lesions.

I was certain I wouldn’t have new lesions on account that I’ve been feeling pretty good. Diet and exercise, in addition to acupuncture and reducing stress have allowed me to live normally and with minimal interruption. Sure, sometimes I feel like it’s raining on my skin, my balance is lackluster at best and brain fog is a companion but it really isn’t that bad. I can and will survive.

But of course I was wrong about the lesions. My new MRI results showed three new enhanced lesions. During our follow up appointment in which I was supposed to pick the medication (I promised) I barter with the doctor. Again. And again she explains to me that just because I don’t feel symptoms doesn’t mean new lesions aren’t forming. As we speak, even.

My options are Gilenya and Tecfedera. I have to either fear heart attacks or JC virus. In fact, Tecfedera hasn’t even been on the market long enough for us to really know the side effects. What if I start growing fins? Or worse, I become the one patient who gets a brain infection. And trust me, I know it’s not that simple. I know that science is smarter than I am. But I also know that when you try to fix one thing in your body, there is a risk of another thing will get sick. Treat MS, say goodbye to your autoimmunity. Or say hello to thyroid issues. Or so many other issues.

I have yet to schedule an appointment to actually start any medicine. I’m too scared. Maybe it’s irrational but I can’t help but to think that with my luck, I will develop a new disorder that will require more medicine.

I suppose by doing nothing I am doing something. By not scheduling that followup appointment with my neurologist, I am making a choice not to take the medicine. I suppose I am taking risk either way. Thanks, MS. Thanks a lot.

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