Tuesday, August 31, 2010


Yep today it is official. I have a number and have my packet of pills and am in the study.

Today was more of the same as last time with test here and there to see how I respond. I had to fill out a quite extensive questionnaire about my fatigue and health perceptions. Most were like "Because of my fatigue, physical activity is: not affected, slightly affected, somewhat affected, much affected, extremely affected". I had to check one for each line and there were perhaps 60 of them. No big deal, but part of the plan visits in the future.

The pill is some little thing the size of a Sudafed but plain white, no markings at all. I can take it any time of day, with or without food. Nothing to tell thus far (of course), but I will keep posting.

Wednesday, August 25, 2010

Post Ultrasound

I had an ultrasound of my pancreas Monday morning it was uneventful. I expected that, but it really looked like poor t.v. reception, not anything you could recognize. A few minutes and 20-30 pictures later, I was done. Two very cool things about it though. The first is that the lube they used was warmed so it wasn't a shock (Julie remembers it being cold at the OB when we had her pregnancy ultrasounds). The other was that this was the first thing on 'their' dime and not mine so all I did was give them my DL, no insurance card. Very nice indeed.

Saturday, August 21, 2010

Drug Trial Here I Come

I had my first intro on Tuesday where I had to basically sign all kinds of forms and see two Dr's. It was not a big deal form that perspective, just time consuming. I also had to get my blood drawn and a urine specimen. Fun fun at DLO! at any rate, I have an ultrasound Monday morning first thing (8am, fasting before for 12 hours) to get a baseline on my pancreas. It will be much like what you think of in pregnancy circles, just obviously looking at different stuff. I am slated for the 31st to actually start meds and such, but if I get 'randomized' earlier I will post about it.

Wednesday, August 11, 2010

Dog Days of Summer

Well they certainly are here and in force. Temperatures near or over 100 (that's 36-40C for you Canadians in the audience :-) ) are just so draining. When I step out of the car (or into one that has been setting in the sun) I can feel my energy go away. Yuck.

My symptoms in my legs are worsening to a degree. They tend to want to bounce around more than they used to and when I stand they are tensing up (locking) more often than I remember. It really is not a big deal later in the day, as it is more common in the morning hours for some reason.

My arms also are getting a little odd on occasion like they did a year ago. A bit of alien arm, not too often, but they get that feeling like they are trying to go to sleep and then feel like they want to move on their own. It is a hard feeling to describe.

I am not too sure what is the cause for what I am feeling. It could be one or more of: true increase in my symptoms, the heat exacerbating everything, me no longer being on maintenance meds (and they were actually helping although I didn't notice until I went off of them), or the anti-placebo effect (now that I know I'm not on meds, my body is responding subconsciously, yada yada). I really have no idea which one or more of these it is, but I am not concerned about the increase at this time. The heat is such a big factor to my overall fatigue anyway, I lean toward thinking it is that more than anything. I suppose if this was happening in December I may feel differently.

I will be seeing my neuro and another on Tuesday the 17th. It is preparation for me entering a drug trial. There will be a number of tests that happen that day and then in the next two weeks I will have other tests (ultrasound, blood work, and an X-ray I think). I will officially enter the trial on the 31st as that is my 'randomization' day where I get a number and my meds to take (oral, daily). The study is double-blind, placebo controlled, with two drug dosages. The short description is no-one knows who has meds or sugar pills and there is a 1/3 chance for placebo, 1/3 for one strength of the drug and 1/3 for the higher dose. Pray for the drug at the highest dosage!