Tuesday, 27 November 2012

I'm still here ;-)

I started my new treatment on 12th November and apart from it being a *very long* day despite Justine being there, it was pretty uneventful.

The reason we had to be in hospital was in case our heart rates dropped after taking the medication.  It seemed such overkill for just swallowing a small capsule but its better to be safe than sorry.  We both had a wireless ECG machine attached to us and every hour the nurse came and took our blood pressure, checked we were feeling OK and took a heart trace.  After all this nothing happened.  There wasn't even a flutter in either of our heart rates - *fantastic*!!!!

The first week I spent feeling very dizzy.  It was almost like I had water in my head sloshing around and I felt nauseous but I could still eat.  Very bizarre.  Last week I began feeling a little more like me apart from being more exhausted than usual.

I can only take medication I have already been prescribed and nothing else new til after Christmas.  This is so the new drug gets into my system and we can really see how I'm tolerating it without any interference from anything else.  Unfortunately this is causing me a bit of a problem.  I am in absolute agony with my legs and can't take any new pain killers to help.  I've got an appointment tomorrow with the Pain Clinic to see if we can up the doses on any of the pills I have now.

Wish me luck!!!

Tuesday, 6 November 2012

Relapse...again :-(

Well I'm sitting here recovering from a relapse...again.  But this one is the worst I've had in about 10 years.

The best way to explain what has happened is to explain how MS works.  MS is an auto-immune disease meaning that the white cells which normally protect you from infection get all confused and start attacking my own body.  They 'nibble' at the myelin coating surrounding the nerve fibres in my brain and cause all of my symptoms.  The myelin is like the plastic coating on the outside of an electrical wire.  When its damaged the electricity can escape and cause all sorts of problems.  The same thing happens to my nerve impulses when the myelin is damaged.

Anything can set of a relaspe, particularly and infection or bug.  I had my flu injection (which I need due to my suppressed immune system) and I'm sure that what set this relapse off.  Because I'm no longer on Tysabri and have no MS disease modifying drugs in my system, my immune system is basically having a party and having a good old nibble.

I've been to hospital for 3 days to have a 3 bags of steroids put into me.  That meant having a canula in my hand for 3 days and not being able to sleep.  On top of the trips to the hospital and the relapse, I think I've had a bug too as I threw up for a week and couldn't keep anything down.  The doc eventually gave me pills for morning sickness and they did the trick.

I'm still very weak and exhausted and just can't be bothered with anything.  To make matters worse I've had a birthiday in amogst all of this and I've not been able to see Jo as she's had a cold and we didn't want to tempt fate.  So my pressies are still with her.  Hopefully I'll get to set her on Saturday and have another birthday!!

Anyway roll on next Monday as I start my new medication, Gilenya.  I'll be in hospital all day for monitoring but at least I'll be with a Justine who I met while we were having Tysabri.

Apologies for this being a long, wordy post but I thought you might like to know whats going on.