Skirmishing with MS Day Zero – Preparing for battle

Those of you who are regular visitors to my blog might have noticed something.

Although I mention it in my bio, and many of my posts relate to disability, I haven’t really blogged about my disability itself.

There’s a couple of reasons for this:  I’m an author, and an artist, and I’d rather people think of those things when they think of me, and not my disability.

Likewise, it’s hard to discuss my disability on a day to day basis, because, to be quite honest, there’s nothing anyone can do about it, I don’t want to risk being pitied, and for me it’d feel like I was just whining about something I can’t change.

Having said all that, I think that right now, there’s a good reason to blog about the events of the coming week(s).

 

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First, some history.

I was diagnosed 10 years ago with Relapsing/Remitting Multiple Sclerosis.  For those of you unfamiliar with this disease, it’s an auto-immune syndrome where the body’s own defence mechanism, the immune system, decides for reasons as yet undiscovered to attack the myelin sheathing surrounding nerves.  In more basic terms, if you imagine an electrical wire, it has the copper core, surrounded by plastic insulation.  MS in effect eats the insulation, exposing the wire beneath, which then can short or break.

I’m changing neurologists, from the excellent ones I had at Johns Hopkins (Hi Dr Susan McDermott!) to one much more local, who came highly recommended.  As part of the move over to the new neurologist’s practice, I was sent to have a new set of MRI scans done – brain, cervical spine, and thoracic spine.

When the films of those MRIs came back, there was an “artifact” on them, between C7-T1.  It appeared on several images making it unlikely to be a simple shadow error in the imaging.  So the basic upshot is, it looks like my MS has managed to start attacking the nerves in my spine – which would explain a numbness/tingling from right hand all the way up to my right ear (don’t ask).

My neurologist did give me good news at the same time, however – there were no black spots on my brain.  This is good because it means there aren’t any actually dead bits!

 

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So that’s the history, and brings me to the purpose of the blog entries I’m planning, and it starts with the ubiquitous “but”:

But my neurologist decided that what I really need is some “Housecleaning”, as he put it.  Which essentially means a 3 day course of the corticosteroid Solumedrol.

And that’s where my problems really begin. Until now, I’d heard of this only being used to try and short circuit the nastiest of exacerbations (the immune system going totally crazy) – never as a prophylactic measure.  In the 10 years since I was diagnosed with MS, I haven’t had to go through this experience a single time.

The process is allegedly fast – a couple of hours for three days, and the medication application is done.

But it’s got the risk of some nasty side effects.

The biggest one is its main purpose – it’s going to kill my immune system for a while.  That makes sense, since it’s trying to beat that self-same immune system into submission, but it’ll increase my risk of infection.

When I’m on the IV and for a while after, I’m going to have a face as red as a beetroot, and have an awful metal taste in my mouth.  Advice around the Interwebs from people who’ve been through this give all sorts of tricks to get around the taste – minds usually, but food is going to be yeuch in all probability.

My blood sugar might spike – enough so that my doctor gave me a couple of insulin pens to use if it does.

I am going to be cranky – well, OK, that might not be the meds, but I’m going to take shameless advantage of them as an excuse when needed

I’m also likely to be hyperactive due to the energy boost many people report from it.  This is a good side effect as I’ve been remiss in my writing of late!

But all joking aside, I’m back to facing a situation I do not like to be in – where I am not in control.

 

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This isn’t an enemy I can fight with a gun or a bomb or a well placed thump upside the head.  It’s not even an enemy I can escape and evade.  Until this stage, I’ve been holding my own against the MS, but this whole idea of the corticosteroids brings it back home to me that I can’t attack something that’s trying to kill me.

One of the things that’s helped me stay relatively calm and stable through waiting for this coming tuesday, the first day of this mini-war over my body, is all the information and discussions and chats and advice I’ve found doing simple Google searches, reading what people who’ve been through this before have experienced and their advice.

And so I hope to blog what I’m going to be experiencing, anything I find works, anything I find doesn’t work, to help get through this, to add to that knowledge, and to give those that face this particular situation in the future with yet another datum to read and hope it helps them.

I’m not even sure if I’ll feel in any shape to blog – or I might be hyperactive and end up writing novel length treatise on the subject of Solumedrol experience – I don’t know.  But I’ll try and keep my sense of humor, and hope that this brief (and unlikely to be repeated) foray into posting about my illness won’t bore anyone too much

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