My MS Portfolio

Posted on 2014/3/31

I’m always hesitant to write about my Multiple Sclerosis as it usually elicits a torrent of sympathetic emails, and whilst I truly appreciate the sentiment, that’s not why I write and certainly not what I’m chasing. I’m not telling you not to write – if that’s what you are compelled to do, but please understand that my desire here is to get it out of me. They say a problem shared is a problem halved. It doesn’t quite work that way but writing about it is cathartic and may help people understand the disease (or it’s symptoms) a little better.

Today has been a tough day – and we’re only just over half way. It’s not just the symptoms, it’s the implications. The last line of this post will help you understand.

I take a lot of medicine. Let’s have a look at Breakfast.

I take Gilenya – an oral medication that attenuates my Immune System and therefore reduces the incidence of new scarring. Unfortunately it doesn’t really help most of my existing Multiple Sclerosis symptoms. The damage is done there and unless Australia legalises Stem Cell Therapy, I’ll never get better…. only worse. That could happen gradually or it could happen after a severe MS attack called an “exacerbation”.

I take Loxalate (also known as Escitalopram) – an SSRI tablet that helps manage my serotonin levels. Depletion of serotonin is common between disorders such as obsessive-compulsive disorder, depression, and anxiety. Dr. Marazziti and his researchers at the University of Pisa in Italy, found that depletion of serotonin also occurs in people who have recently fallen in love. This leads to the obsessive component associated with early stages of love. (Badawy, Abdulla (2000). “Serotonin:the stuff of romance”. The Biochemist: 15–17.)

I take large doses of Vitamin D as low levels of this Vitamin have been postulated as part of the many factors leading to MS.

In the evening, I take Sifrol. This usually a medication taken by sufferers of Parkinsons Disease. But for me, it’s to treat my RLS – Restless Leg Syndrome. Now this is a truly bizarre syndrome. As the day progresses, my feet and lower legs begin to feel like they are charging up with static electricity. If I concentrate really hard, I can keep them still but over 45-60 seconds, the “pressure” builds and eventually they will move/bounce/wiggle whether I like it or not. It makes it very difficult to stay still and it makes it almost impossible for my Wife to share our bed!

I’m also on Seroquel. You can tell by its name, it’s another medicine to manage my Serotonin levels. In this instance, it helps me sleep. Without it, I am beyond an Insomniac. I don’t seem to need sleep. At all. It takes over 48 hours for me to start feeling tired – and then it hits me like a brick wall.

Baclofen is another medication I wish I wasn’t on. It’s primarily used to treat Spasticity. I do have some of that – I’ll explain more later in this post. I use it primarily to minimise the pain I sporadically get in my face. It’s a stabbing sensation that radiates from my temples, through my cheeks and into my lower teeth. It’s irregular but when it hits, I just want to hunt down some morphine. Thankfully, Baclofen and an irresponsible amount of Codeine get me through ok.

So let’s talk about my symptoms.

Some are conventional. Headaches, cramps and fatigue. The difference is the amplification. Just imagine a headache but instead of a scale of 1-10 we now have a scale of 1-100 and the pain sits somewhere around needing to drill a hole in my head to let the pressure off!

I get the shakes. Mainly in my hands. I have an extremely weak grip. My toes feel like someone is inserting pins into them. I am 75% numb from the knees down and 50% from Belly Button to Knees. Make of that what you will!

I have increasingly severe short-term memory loss. (Yet, I can remember trivia from 30 years ago). I can’t sleep. But then (almost daily now) I’ll suddenly be hit with the worst fatigue you can imagine. The yawning starts, I stretch which causes spasticity and shaking. I can’t keep my eyes open. I feel nauseous from how tired I am. It’s. Just. Awful.

132653_f260I get double-vision and my eyes shake. I get visual hallucinations where I catch things moving out of the corner of my eye but when I look, there’s nothing there. I’m also starting to get auditory hallucinations too.

My Startle Reflex is massively amplified – and it makes me lose my temper. Loud unexpected sounds give me a massive rush of adrenalin – which is no fun.

Every morning, my legs are incredibly stiff. Probably from the cramps the night before. They’re sore and I simply can’t move without my Walking Stick. Unf0rtunately, transitions – that’s moving from laying down to standing or standing to sitting make me incredibly dizzy. Nauseatingly dizzy. I’ve fallen over more times than I care to admit – sometimes quite heavily.

I am starting to get Mental Fogginess far more often. With that comes confusion. I sometimes have trouble picking left from right. Sometimes utensils seem… wrong. There have been occasions where I’m driving somewhere and completely forget where I’m going. It’s upsetting and frustrating. I suspect I’m going to have to stop driving soon.

The latest challenge is involuntary vocalisations. I’ll find myself saying “ah-huh” or “Mmm” without meaning to. It’s not that this one is particularly a problem. It’s just that when it’s added to the list it demonstrates I’m slowly, but surely, deteriorating.

I’ve always said that I’m not too fussed about physical symptoms. I’ve never been a sporting kind of person, so if I am to get MS Symptoms – physical is fine by me. It’s been that way now for the last 10 years but recently, it’s started affecting my cognition and memory as well.

I try to keep my mouth shut as much as possible. There’s no point in whinging about things. They are what they are. I take my medicine, dull the pain with analgesics and try to distract myself with Internet. Whilst I share everything with the Wife, I try not to concern her with the minutiae of my minute-to-minute aches, pains, cramps and the menagerie of bizarre feelings that damaged nerves generate. There’s no point in making the people around me suffer too!

So that’s a general overview of my symptoms.

Is there anything more that can be done?

Oh yes.

There was a recent 60 Minutes story about a woman who went to Russia for Stem Cell Therapy. She seems to be doing well, but I’m loathe to spend $100k on a trip to a Country whose Medicine isn’t supposed to be as good as ours. I’m hoping the therapy will start here soon. We’ll see. (You can find Kristy’s Blog here: www.movingmountains2013.com)

There’s also Cannabis – or Marijuana. No longer the domain of Cheech & Chong, it’s now been proven internationally to have very beneficial effects for those of us with MS. I’d dearly like to try it so I’m keeping my eyes open for any trials here in Oz, but so far nothing. When I told my Doctor about it, he wasn’t aware. That blew my mind. My medications are on the PBS and cost Taxpayers around $3000 a month. Marijuana can be grown in the garden and costs nothing. I’d rather eat something that has never killed anyone than take potentially toxic and stupidly expensive pharmaceuticals.

I’m not sure what the future holds. I’m hoping MS will be cured. But I don’t think my symptoms can be repaired.

And as a result, it may very well be the end of my dream to be on Radio. 8-(

PS: I try to keep a positive attitude. If you’re interested, I have compiled a lot of my thoughts and ideas into an eBook that’s available via iTunes. It’s free. Have a look and let me know your thoughts.
https://itunes.apple.com/au/book/20-000-days/id740350898?mt=11


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