Wednesday, 28 November 2012

Week 11 - 28.11.12

It has been almost 12 weeks since I started taking Gilenya and I am happy to inform anyone reading this who may be contemplating trying the drug, that I have not experienced any side effects whatsoever.

Over the 3 months there have been ups and downs with my illness, but nothing more than the usual stuff. I have had a torrid 6 months. I spent 3 weeks in hospital after I fell over and broke my arm; I've suffered a relapse not long after my release from hospital. Also I was involved in a car accident recently where my car got written off. All of these incidents do have an effect on an MSers well being.

There have been a few changes over the last week though. Positive changes. Improvements, no less.

My fatigue feels better. I feel a lot more alert - Until the amitriptyline kicks in, in the evening, that is!

I've also been more regular in the bowels department. I never suffered with constipation before I got diagnosed with MS, but it's been a bit shitty since. Pun intended.

I've had control of my bladder since I was taught intermittent self catheterisation, but I have been holding onto it for longer and I am catheterising 4 times a day instead of 6. It's a piece of piss! Two puns in one blog. You are a lucky lot (person).

That's my observations of late noted. Lets hope things continue to improve and I can say that it definitely is the Gilenya. That would be happy days.


Friday, 16 November 2012

Week 10 - 16.11.12

I had an appointment with an Ophthalmologist the other day. It was a routine app that you need to have once you have been on Fingolimod for 2 months.

Ophthalmology is the branch of medical science that deals with the anatomy, functions and diseases of the eye. Yep, I admit it, I lifted that from - They've got a bit of free advertising, so lets call it quits.

Anyway, I did the usual pyramid of letters test and they plonked some drops in my eyes so that my pupils dilated and looked into the back of my eyes with a couple of different gadgets. After being told everything is okay, I was sent to the photographer to have pictures taken of my pupils. The end result is that I've been discharged with no need for a follow up appointment.

Lets carry on with the Fingolimod then.


Monday, 12 November 2012

Week 9. - 12.11.12

Lots has happend this week. Good and bad. Lets start with the good news.

There has been improvements with my symptoms on a few occasions where I genuinely wondered if the reason I was feeling so well was because of the Fingolimod. Anyway, I've noticed that my walking was less laboured, my fatigue was non existent and I had more movement in my fingers and toes. My neuropathic pain, which is minimal anyway was non existent. I really did feel tip top. It was never for long periods. Say a couple of hours one morning and the same again the next day in the afternoon or evening.

Now you've probably noticed the constant use of the past tense, so here comes the bad news.

On Friday, I was involved in a car accident. I was driving. Nobody was hurt, but I can comfortably tell you the airbags in my car work! The accident was the other driver's fault, by the way. I just hope Motability can get me a courtesy car with hand controls sooner, rather than later.

All day Saturday, I felt like crap. My walking was extremely difficult and I laid on the bed for most of the day. I was in a foul mood too, which worried me, because that is a sign of a relapse with me...

Not one to end on a downer, I was much better Sunday, so maybe I was in shock. Lets hope so.


Friday, 2 November 2012

Week 8. 2/11/12

I've been taking Fingollimod for 8 weeks now. It's actually a couple of days over, but I've spent the last 48 hours trying to think of something to write. Not literally, mind. I'm not that dedicated to this blog!

8 weeks in and still no adverse effects at all. I just got de jà vue then. Replace the number eight with seven or six and I'm certain it has been said before.

I haven't noticed any improvements. I have spoken to a couple of people on Twitter who are from the States who have been on Fingolimod for around a year now and they both told me that after 3-4 months they noticed improvements. The drug is about stopping relapses, it doesn't repair myelin, but maybe the fact that your immune system is suppressed, your nervous system has a chance to repair itself free from attack from my white blood cells. I'm not a scientist, so don't quote me on that.

When I started Nataluzumab (Tysabri), I did pick up after a few months, so I'm crossing my fingers on this one. Like I've already said, I am hoping this medication will slow down my disease progression, and any improvements will be a very gratefully received bonus.