Notices by Erik Uden 🍑 (erikuden@mastodon.de), page 10

15:42
A Senior Research Associate of ICON came and asked me how I was doing. She said she would probably call an “Investigator” to ask what should be done in this case, but later decided against it, citing that we are allowed to take 200mg of paracetamol a day. Moments ago I got a pear to eat and took two pills of probably paracetamol (didn't read them, since I had to sit in the Kitchen and couldn't concentrate due to sitting upwards). She also discussed a “blood patch” (closing the hole with a patch of autologous blood), yet that would be the last option. We'll try painkillers first. Can the hole close itself? Didn't get a definite answer on that one...

16:10
Apparently the hole doesn't close for younger and thinner patients when a needle that's too thick is being used for the lumbar puncture. For twinks like me, they'd need to try it with a thinner needle. I'll suggest that the next time.

21:51
The painkillers were a very good idea. I also feel a lot better knowing where the headaches come from and what I can do against them. I just had a three hour phone call lying down on the floor. Some of the first things people saw when entering this clinic was a guy lying on the floor calling in German. Beautiful.

Day 007 of the Multiple Sklerosis Study
(Compound Day 4) Sunday on 2024-09-09
Groningen, Netherlands (GMT+1)

07:30 Wellbeing (Pre dose)
07:40 Urine clinical chemistry (Not sooner)
08:40 ECG (3x measurements)
08:40 Vital signs (BP, HR)
08:55 Blood sampling

• PK: Sample 14
• SR PD 2-AG: Sample
• Clinical chemistry

08:55 Transfer bloodtubes
09:10 Breakfast (Start)
09:40 Dose (RO7268489 or placebo)
09:40 Dose check
09:40 Water fast (Start)
11:40 Water fast (Stop)
11:40 Morning snack
13:10 Lunch
15:30 Afternoon snack
18:30 Dinner
19:00 Wellbeing
21:30 Evening snack

Water intake: 12 (glasses, three tea, one compound)
Limb stiffness / mild pain (all day)

02:00 (written afterwards)
I was once again woken up by an assistant telling me my wristband sent off an alarm and I need to wear it tighter. Also, she said that my wristband sounds an alarm for bed 17 (for some reason). I am bed 13. So in shock she realized this alarm was not for me but for bed 17. So she went to bed 17 to check what's going on there, assuming that they accidentally swapped wristbands for us both. I fell asleep immediately after, so I have no idea what went on there.

08:51
I drank a hell of a lot because we all forgot we need to give a urine sample in the morning and there needs to be one before breakfast.

08:52
The effects this study had on me are mild, next to the headache and muscle stiffness caused by the lumbar puncture, but not the studied compound itself. However, what I've experienced for the first time is seeing my own body from afar, and I don't mean that in the literal sense. Although I experience myself, and body and mind aren't as separated as people think, I often feel like I use my body, but am not my body. I talk about it, how it feels, and what I can do to make a certain pain go away, but I have begun to associate that not with myself. I have, for the first time, seen my body as something completely separate. Not sure if this is just an effect that comes from studies like this itself, or something noteworthy. I find it very interesting.

18:39
“Oh, yeah, the order was wrong so we had to assign different meals to everyone. You said you were vegetarian, but didn't say you didn't eat any fish.”

Oh ok then...

22:37
No headaches today!! Can you believe it? None!!

Day 008 of the Multiple Sklerosis Study
(Compound Day 5) Sunday on 2024-09-10
Groningen, Netherlands (GMT+1)

07:30 Wellbeing (Pre dose)
08:40 ECG (3x measurements after 10m)
08:40 Vital signs (BP, HR)
08:55 Blood sampling (PK: Sample 15)
08:55 Transfer bloodtubes
09:10 Breakfast (Start)
09:40 Dose (RO7268489 or placebo)
09:40 Dose check
09:40 Water fast (Start)
11:40 Water fast (Stop (
11:40 Morning snack
13:10 Lunch
15:30 Afternoon snack
18:30 Dinner
19:00 Wellbeing
21:00 Evening Snack

Water intake: 1 (glass)

• 07:15 - Now slight pain in the lower left back. It extends to the soreness of my legs.
• 07:15 - Now arms are sore and slight muscle ache too
• (already since yesterday until now) a slight pain in my lower left back, under the lumbar puncture. It extends until my upper left leg. Might be soreness/stiffness/pain, might be something else. Headaches are gone!

08:31
Just managed to have a shower before any ECGs! I was just on time!

im currently having a panic attack

I am currently higher than the moon.

tom scott ahh toot

:tomscott_is_at: i am currently in my bed surrounded by 8 doctors all struggling to figure what us going on (the cannabinoid receptors are doing their thing)

expect a 10000 words paragraph on how I'm feeling today. this will be a [1/x] kinda thread

i can really recommend hitting that RO7268489, jesus, the doctors joked that now “feeling like a hamster” will have to be on the side-effect list

if you ever take this shit on a 0.6 milligram per day dosis, remember that one of the side effects is being astral projected on the outskirts of the universe... man... what is going on

It all began about 12:15 when I looked

okay, I'm gonna watch SpongeBob now, I had like a 13 minute blackout writing this last sence

im high as a kite

i am laughing at my own jokes in this thread iiii

Okay, I'm gonna go back for real now !!

@funbaker Yes.

this sticker I spotted in Groningen is so concerning

A) why a Minecraft rap? I get maybe Minecraft music, but why specifically a rap?

B) why a rap about a resource pack (a modification to Minecraft that makes things look differently)? Why not just... a showcase video of how things look?

C) WHY MAKE STICKERS ADVERTISING THE RAP,,, like you're not even advertising the resource pack? Why not post it online, to forums, etc.? Where people who play Minecraft are? They're not well known for going outside...

This is just the most confusing thing. I counted and was blessed with 14 (!!!) stickers just here in Groningen alone. The comments are full of people saying they saw it in other cities. What's going on?

@GreenSkyOverMe das ist ja nicht auszuhalten!

@GreenSkyOverMe Du suchst mich heim in meinem eigenen Zuhause, nur um so einen Disrespekt aufzuweisen. Hier ein Video davon wie ein guter Pfirsich klingen soll:

https://youtube.com/shorts/fXDrjevH3-I

10:44 (Continuation)

Another interesting thought I had was that the study master told me they would end the study if a medical doctor suggested to do so. If they classify it to be too dangerous to continue, and that would be outside of my control, whether I wish to continue or not. For my own safety I should hence always be honest about how I feel. Though, how did you document that this compound gave people a panic attack and severe disorientation, as well as the inability to form coherent thoughts or sentences for 3-5 days? Did you continue giving the drug then? Was the study ended abruptly after one day but the rest still recorded? Was this not seen as an emergency? How can ONE person have a condition for “3-5 days”. Many questions that swirl around your head when your situation is questionable like this. However, I'm sure there's a logical explanation for it all. I'm just glad to be safe and surrounded by experts, who, in case anything were to be happening, could help me with whatever was going on. Also I like the people that are here with me!

12:25
I've written most of the previous text up until now. I have a slight headache that started about 30 minutes ago (maybe due to staring at a screen, maybe I didn't sleep well enough, maybe this morning was too stressful, maybe I didn't drink enough). I am going to have a rest from this point on and take it easy! Have a wonderful day!

12:44
Now posting all of this to Mastodon - I also wonder what the cogstate test training will be like. This afternoon we will be trained on how to do a test regarding our cognitive function.

17:36
Just had my wellbeing! Reported all my pains, but most of them are entirely gone now (headache, etc). I'm feeling well!

21:44
Just took a shower before my cannula was checked because they just put a lot of effort into wrapping cling film around it to make it water resistant. Last shower for the next two days because I need to wear an electronic device for 24 hours to monitor my every move starting tomorrow (not like not showering for two days was weird for the average IT guy). Thanks to the device I also can't use any electric tooth brush or razor as it disturbs the machine.

Spent the evening managing a lot with my work, friends, Mastodon, and future place to live! Tomorrow, however, I will be tied to the bed (not literally) so, I am not going to continue working (which is a good thing).

Another day that felt like a week. Coming from my busy and rigid schedule of my former life into the, yes quite busy and rigid hospital life but everything happens at the same place and people take care of you, does slow my perception of time down a lot. I know that when I generally feel like this, only the first days give me this feeling, but after the first week, once it becomes normal again, time begins to speed up. Although time doesn't really pass slowly, it passes quickly, yet so much happens that I remember it as being very much / long. A “short long” for those in the field!

23:59
Just had a two hour phone call with friends. Pretty cool day so far, also nice to finally have the time to do that :)