Their is none lol, feel very deflated over the whole thing, a few of us discussed this on facebook, we all seem to feel things have sped up since we started it, surely this cant be the case but it does get you thinking.
Went for my month 2 vist and i am worn out, felt like a human pin cushion! bloods after bloods after bloods, i didnt think i had that much in me lol, at least thats the worst one out of the way. On the positive side my weight seemed to have gone up a bit and my breathing was better which was a shock, 93 compaired to 86 at the start ;-) maybe its because of the breathing exercises ive been doing, TALKING lol. The staff there are great and very friendly, oh and a bit mad lol.
Goto thank my buddy for taking me and sitting there all day ;-) Well Polly did make him Danny and myself a great curry for tea last night, with starters too, she worked very hard to make the curry from scratch, she's a star!
Off to the trial clinic tomorrow and its going to be a very long day, over 8 hours due to me opting to having bloods taken at intervals so they can see how quick the drug gets absorbed or something. I opted for this with the thinking that maybe if i was willing to do everything they asked it may increase my chance of getting the real drug! im probably way off the mark but you never know, why would they go to all the trouble of checking how the drug is absorbed if it was a placebo? its probably just wishful thinking lol.
Still seem to be losing a little weight and patchy sleep, other than that i am fine. This will be my month 2 visit, a possible 16 more to go.
This may be due to the meds but i'm not sure, i saw a post on a forum about it and thought mmmm thats happening to me. So the problem is sleep, ive never had a problem sleeping, i could fall sleep on a washing line lol but recently ive noticed i do struggle a bit, i get restless in bed at times and if i do get sleep i wake up for a jimmy riddle and the cant get back sleep for ages!
It may be the dex, it may not.
Had my first home visit yesterday which was better than trecking to hosi, the nurse was nice and very easy to chat with.
Everything seems ok, not really noticing much at the min besides my loss of apetite, i'll be falling down grids soon lol.
I am putting this here in case its related to the meds. It seems since i started the tablets i dont have the same appetite for food, some days i get hungry and enjoy what i have but quite a lot of days i dont, i dont even get hungry when ive had virtually nothing all day. Now it is a bit of a worry as im only skinny anyway and cant afford not to eat, is it the Dex drug? is it ALS? or is it something else? i dont no.
Nothing new to report really, pretty much no different to before i started. I have sat in all afternoon thinking my first home visit was today (well it did say that on my card) but it turns out i should have been contacted by the nurses that come out to arrange a time and day, obviously ive not, now it could be anytime in the next week but should get a call pretty soon. I guess with this trial being new and at the very start there will be teething troubles.
Coming up to 2 weeks on the trial and everything seems to be ok, i do still have a bit of indegestion but nothing i cant handle. One thing is the tablets taste friggin awful. Back to the hosi on thursday for my first MOT since starting the meds, hopefully it will be quite short and sweet.
Everything has pretty much been ok, indigestion was pretty uncomfortable for first few days and also had a light headache all friday which wasnt too bad but i woke up saturday with it and was a little worse, took 1 pain killer and that sorted me out. Since then everythings been ok, hopefully it will continue that way.
Had my second full day on meds yesterday and the only thing i noticed was terrable indegestion. Besides that everything was fine. I did feel a bit shakey (well more than normal) but i put that down to being a bit anxious and reality of what i am doing kicking in.
Still got it a bit today but not as bad, also had a call of Doc to say my pee sample shows an infection so been constantley drinking water.