LAX – Not the airport, just a bit lax at writing about MS…

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I’ve come to the conclusion that I’m not a very good blogger…  I don’t think that I have the ego to write about myself and my MS on a regular basis, so I’ve decided that I shouldn’t sweat it and just do what I feel comes naturally…  There is also the fact that if I were to write about my MS constantly, people would get even more bored than they are already!

Another point is, there is only so much about MS that I can write…  I’m not an expert – indeed, I honestly believe that MS is such a PITA, individualised condition that even the “experts” aren’t that expert.

So, what CAN I write?  Well, as I have Progressive Relapsing MS, I can write about that I suppose.  Being special, PRMS is only found in about 5-10% of MS sufferers, indeed whereas the National MS Society in the US has an entire section dedicated to it (http://www.nationalmssociety.org/about-multiple-sclerosis/progressive-ms/progressive-relapsing-ms/index.aspx), the UK MS Society mentions it as barely a footnote (http://www.mssociety.org.uk/what-is-ms/types-of-ms/primary-progressive-ppms).  Not that good if you need information about treatment available over here.  Which is going to be the subject of today’s sermon…

All types of MS are difficult to treat – what works for one may not work for another, not only that, the majority of the research into treatments goes into Relapsing Remitting and Secondary Progressive MS as they are the most common – indeed, SPMS often follows on from RRMS.  As RPMS is barely recognised by the UK MS Society…  This means that I am very lucky to have a consultant that knows his stuff (ignoring my comments above about “experts”!) and has prescribed, not disease modifying medication, but disease managing medication.  And therein lies the rub.

Side-effects.  (Warning, this next bit contains a bit of ickiness…)

I have been prescribed Amantadine, Propanolol and Nortryptaline, with occasional prescriptions of Methylprednisalone when I’m really bad.  This means that I can take up to 11 tablets at a time.  With all these drugs rattling around my system, there are bound to be side-effects.

This is why yesterday, I took the rather dodgy decision to stop taking them.

I had to.  For my health (perversely), my sanity and K’s safety.

First my health:  despite being prescribed eight sachets of Laxidos daily, I’ve not been for a pooh in over three weeks…  It’s long been suspected, but I am officially full of sh*t.  To put this into perspective, eight sachets at once just one time is the amount to clear someone out in preparation for a colonoscopy; over three days is the amount to clear feacal impaction.  I’ve been taking this many for TWO weeks.

I have also been suffering from the most incredible heartburn…  So I’ve been popping Ranitidine like Smarties and drinking Gaviscon like lemonade.

Finally, my sanity and K’s safety.  The most distressing side effect is the horrible night terrors and nightmares that I have been suffering from.

This came to a head on Saturday night.

I don’t remember the details of the dream in question, all I know is that apparently I was moaning and groaning in my sleep, K said that I appeared in some distress, so she tried to gently wake me.  And I lashed out.

Nearly hitting her in the face.

And it wasn’t the first time.

Obviously this could not continue.  So I have stopped taking my medication, and although my legs feel like complete and utter cr*p, last night I slept with no problems.  And so did K.  However, this raises more issues.  I’m on medication for a reason, and if I don’t take it, I’m not the only one that suffers.

Devil, deep blue sea.  Rock, hard place.

Luckily, we don’t have a GP’s surgery where you need a letter from God to get an appointment and I am seeing one tomorrow, and not only that, I have been given longer than the prescribed ten minute slot.

Unfortunately, I don’t know what other treatment can be provided…  There are plenty listed on the US MS Society site.  But nothing on the UK’s site.  Which is cr*p.

Ah well, I suppose I’ll find out tomorrow.  Laters.

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