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Sunday, 31 July 2011
Uncertain Times! - Such is life with Multiple Sclerosis
Sun, 31/07/2011 - 13:18
My memory of time and events is very poor these days, so timelines will invariably be somewhat suspect. Suffice it to say that in the last oh I don't know two to three months I have not been feeling my usual self well my usual "MS self" anyway.
I have been doing the Teriflunomide trial and religiously taking the little white pill every day, it's only taken well a damn long time to get into the pill taking routine lol. I felt like I was having an exacerbation, but not the usual specific type that is usually quite obvious (can't walk, can't see type) this one seemed to be affecting all the things I have experienced before and just reminding me of those wonderful times (sarcasm of course).
The big advantage of doing a drug trial is that you are in contact with "MS Nurses" and "MS neurologists" on a fairly regular basis. Of course it is also important to keep the medicos informed of disease events or irregularities with your health and well being, it's encouraged of course.
Having dealt with the same neurologist on many occasions he knows I am not the type that thinks every little health problem is caused by MS, I have a fair idea of what may be a concern or might just be a bad MS day etc. I voiced my concerns about this latest issue with the Drug trial nurse, but I also said that it's nothing major and I don't want steroids, lets see how it goes, so we left it at that, all good.
Probably about 6 weeks later, when I went for my regular drug trial visit, I felt a little worse and was not improving, it was decided that I should see the Neuro and discuss things with him, anyway to cut a boring long story a bit shorter, what usually would take half an hour for the drug trial tests ended up taking the whole day. I arrived there at about ten in the morning and didn't leave until about six in the evening, it was dark outside anyway. I had the first dose of steroids and the rest was done at home with "Hospital in the Home".
Even though I really do dislike the steroids, it definitely seemed to be helping as time went on, I am back to my usual "MS self", just let me make it clear "MS DOES STILL SUCK OK" I can't climb a bloody mountain!
Anyway amongst all this I was quite scared about my future and of course the bloody steroids seem to make me more emotional as well, it's a good part of the reason I don't like them lol.
About two weeks ago I had an MRI not just because of the "suspected exacerbation" but I was due to have one (nothing to do with the drug trial by the way) as I hadn't had one for about 12 months or more I guess. Now usually I am fine with them, I get them to put the radio on to 3RRR, they grease me up slide me into the machine and away we go, seriously I usually nearly fall asleep, I am that used to them, having had so many. This MRI did include a trace dye of some sort (bloody needles) and it was also a brain and spinal cord version of the wonderful MRI experience, so it was that little bit longer than just a brain only type.
It's funny it's like they have a menu that you never see and they pick what you want from it and they upsold me the dye and the spine scan as an addon, I want to choose myself from this bloody menu! As usual the MRI people were all wonderful all three of them greeted me as I emerged from the tomb. I should have worn a suit, it felt like an occasion.
The funny thing is though I felt really disorientated when I emerged and had trouble standing up, even felt a little light headed, just what was in that dye, I think I may ask for some Phenergen next time, or get a pack of them to have on hand for such scans, I have a CT scan due in october, I find that phenergen just takes the edge off, it puts me in a happy place.
This week I saw the Neuro after the drug trial nurse did her thing and we discussed the MRI, there was no obvious signs of any exacerbation trauma on the Myelin, in fact when compared to the last MRI I had, some of the lesions had even shrunk slightly, there was nothing really definitive that the Neuro had to say, he did say after I questioned him that it's possible that it could be an exacerbation that occured pretty much on top of an old leasion so it wouldn't be so obvious and wouldn't be as severe which could account for it not being a full on exacerbation and as I said above it was kind of like old symptoms coming back to haunt me, so that may just be what it was.
Oh he also said that the Teriflunomide trial seems to be doing well in other more advanced trials around the world, I also found out that in January of next year the trial ends, well sort of in that after this time we then discuss whether I continue on it or stop taking the drug and require a washout. I think if I continue I will definitely be on the real deal as at the moment I don't know if I am on placebo or not.
So that's about three months of my life summed up in a page lmao
Note: This is from a blog I wrote on www.ozms.org previously.