Been a while since I was last on here but this feels as good a time as any to come back.
It’s amazing how you can go from plodding along life nicely to all of a sudden waking up one morning to find everything has changed overnight! I’ve been sitting on a merry go around for the last 5 weeks. It’s no exaggeration to say I feel like I can feel the earth spinning on its axis and and I dare not close my eyes as this just speeds the motion up which makes trying to sleep interesting. Weaknes in my limbs and slurring my words inreasingly are enough to send alarm bells ringing anyway but it’s the duration this has constantly been hitting me for that makes me think this must be an attack. Been for a head scan and off for a head and spine scan next week to see if there are any new scars flashing up. I guess I just need to sit patiently for results to come back.
In the mean time I am left to question if changing from injections to a tablet to help prevent attack, with the tablets apparently being more effective at doing so, was a good idea. Definitely happy not needing to stick a needle in my leg anymore but would this have happened if I had not changed to Gilenya? I will never know. The next level to go to is an infusion every 4 weeks to create a barrier between the brain and blood. Now the first side effect I was told about was death! So I did kinda rule that one out to take the Gilenya but if that hasn’t even got me past a year then maybe I need to reconsider this! But I’m going with my own feeling right now, this may not be an attack it might be something else but I will be surprised if I’m wrong.
After two years of trying I had an appointment with the chronic pain clinic to deal with the nerve damage pain as my tablets have not worked for 3 years. Opening line was the pain will not go away. I already knew this but it’s a bit different when a Dr says it. Looking at the pain management options I was very surprised that morphine and methadone are available to me if I want them. I can’t rule anything out now so we shall see where we end up!
I am essentially housebound, struggling to do any work as I cannot focus on what I’m looking at. I have watched so much crap on TV and had many intellectual conversations with the cats and dog!
Hopefully get some answers this week but it’s more likely to come through next week. On we go, head held high…..ish