I have been talking about MS related stuff that's not Gilenya recently. The reason for this is that I don't have much to say about Gilenya. In fact, all I do seem to say about it is that I don't have anything to say about it.
Therefore Ive decided to create a second blog. This new one will not be so factual. It will be my ppinion, merely my inane ramblings about MS. I'm going to call it 'Dan's Inane MS Ramblings'. I promise it will be as boring as the title suggests.
I will keep this one to talk about Gilenya and possibly other disease modifying drugs. It might become bi-weekly now, I suppose it all depends on what is going on in the world of Gilenya.
I spoke recently about an issue I was having with my eyes. Was it optic neuritis? Was it being caused by the Gilenya? Was it the hot summer (by the UK's standards)? So many possible factors. My eyesight has settled right down of late, which suggests the problem could be to do with the weather. The heat, the humidity.
I have got an appointment to see an ophthalmologist (eye doctor) next week that I arranged back in July when my eye issues were at their peak. Even though they've settled down, I've kept the appointment. I though it was today (Thursday). I was going to give you an update, but when I checked in, they told me I was a week early! Well, I was not prepared to wait that long, obvs (sorry, but I only wrote that sentance so I could write the word 'obvs.) so I came home and rued the fact that I had got up early for nothing. Whose fault was this admin error ? It certainly wasn't my mistake. Even if it was, I'm not to blame because I've got MS! This has messed my diary entry right up!
What they WILL do is make sure there isn't any Gilenya caused, swelling of the macula (a spot in the centre of the retina). They will also be able to tell me if there is any damage to the myelin around the optic nerve.
If both of these are okay, it will leave me happy that my troublesome eyes played up because of the humid summer we had and that there is nothing sinister going on just yet.
I feel like I am just repeating what I've already said, so I'll stop wasting your time (again). Don't blame me though, blame the appointments clerk at Southend hospital: or my MS, you can blame that too.
Happy Friday
Dan
Hi Dan, I made an appointment this coming Monday morning for the exact same reason (to know if the complaints I keep having with my eyes are Gilenya of MS-myeline -related, and if something can be done about it) with the ophthalmologist at the same hospital as the MS-center I attend.. If something worth mentioning pops up, I will let you know. all the best.
ReplyDeleteThanks, Bert. You will hopefully be all clear and it can be put down to the humid weather like me. Where about in the world are you? The States? Let me know how you get on and what your Neuro says.
DeleteDan
No, not in the States. I'm in ol' Europe, in Flanders/Belgium, (and trusting Google spell checker). My profile on G+ where you also announce your updates. Could you send me your e-mail address? I could be reached at entropy 3 @google.com (without the spaces) If something worthwhile does pop up, it would be perhaps be more convenient to let you know that way? My neuro is attending Ectrims - 2013 at the moment (like yours is I believe) (un)fortunately enough, I would be interesting to know what the man thinks about me as well right now.. best regards
DeleteHi Bert, sorry for the delay. My phone died and went to meet its maker. I only got my new one yesterday. My email address is demyelinatingdan@gmail.com I check the account pretty much every day, so you or anyone can contact me there whenever you want.
DeleteI had my eye test yesterday and all is clear.
Dan
I'm back from my eye-check-up today. No side-effects from Gilenya, but there is some dimyelintion noticeable (doh) on my optic nerves. next checkup in 6 months or so. So some good and bad news, but I'm pleased it's not worse the that. All the best
ReplyDelete