Tomorrow I will begin my participation in a medical study for the coming 19 days, testing a compound meant to treat multiple sklerosis. The specific compound name is RO7268489, which has been tested on 67 people in four previous studies as of yet. Both the FDA and the EMA have not approved this compound for a treatment.

Multiple sklerosis (MS) is caused when a protective coating on nerve cells (called myelin) is damaged in the central nervous system. A majority of approved drugs for the treatment of MS only influence the immune system in a way that relapse rates are reduced. The compound I am testing targets mechanisms in the brain responsible for worsening the disability, hence improving neurological functions.

My study is the fifth of this kind, ever, and is conducted in Groningen (Netherlands) by the ICON plc, a private healthcare intelligence and clinical research organization trading at the Nasdaq. The sponsor of this study is Roche (F. Hoffmann-La Roche AG), a private healthcare company. The specific code for the study I'm participating in is PRA-RPUBIU40-0H13WG.

This compound is well tolerated in doses below 2mg, and due to unwanted side effects¹, the medical company sponsoring this study has decided to only continue testing below that dosis. Before this, it was tested until 6mg.

This part of the study is a “Multiple Ascending Dose” study, meaning it's supposed to evaluate safety and tolerability of the compound on the human body, as well as how quickly it gets digested, or how the human body generally responds to it (pharmacokinetics). Three groups of the compound are tested, each divided in two subgroups, one of which truly takes the compound, the other gets the placebo.

Group 1 gets 0.2mg of the compound
Group 2 gets 0.6mg of the compound
Group 3 gets 1.0mg of the compound

I am part of group 2 (b), which has 6 subjects taking the real drug, and two taking a placebo, meaning there's a 25% chance I'm simply drinking a glass of water for three weeks.

The research facility aims to also see the effects of the compound in the body (pharmacodynamics).

In order to do so, they will take cerebrospinal fluid samples through a lumbar puncture three times throughout the study.

If anything happens to me in the coming four years as a result of the effects of this compound or study, I have an insurance of 650,000 € (same amount is paid out to my family in the case of me dying).

Whatever I'll experience throughout the coming weeks is what multiple sklerosis patients will have to listen to as disclaimers whenever they'll take this medicine once it's approved.

I'll document everything I experience, both side effects and my overall thoughts, in this thread. That is for both my own sake, and maybe to document a piece of medical history, if it ever comes that far. Additionally, this may not be something you hear of a lot, hence I wanted to put it out there.

If you have any questions, I'll be happy to answer them!

_{¹ Side effects include: anxiety attacks & increased heart rate, hyperventilation, motor unsteadiness, severe paranoia, trouble speaking, trouble completing sentences, trouble verbalizing thoughts and a feeling of loss of control (which lasted 3-5 days until full recovery), increased suicidal tendencies}

At 06:16, writing this as I'm walking: I have just left my house and will begin the drive to Groningen via public transport shortly.

2024.09.03 | Trip to ICON
---------------------------
╔═════[Hannover]══════
║
╠═╡06:46 Hannover
╠═🟢╡09:14 Leer (Ostfriesland) zm
╠═╡IC 2436 249 km
║
╠═════════Leer═════════
║
╠═╡09:30 Leer (Ostfriesland)
╠═🟢╡10:25 Groningen Hoofdstation
╠═╡Bus 72009 68 km
║
╠═══════Groningen══════
║
╠═╡10:44 Groningen Hoofdstation
╠═🟢╡10:53 Corpus den Hoorn Zuid
╠═╡Bus 10
║
╚═════[Groningen]════

Stats:

Time Interval Travelled
06:46 - 10:59

Total Time Travelled
04:13 h

Total Distance Travelled
307 km

Live Track my Journey

#NowTräwelling
[1] https://traewelling.de/status/3313315
[2] https://traewelling.de/status/3314373

Notes

06:45
The IC (train) by :db_b: I'm traveling with has just announced, one minute before departure, that it will not be stopping in 8 out of the 11 stops. Leer (where I need to go), is one of the 8 stops my train will simply not go to. I will have to redo the entire plan for today, as the bus going to Groningen from Leer is only going once every two hours.

07:12
Apparently that's not the case?? We're stopping at one of the non-mentioned stops. I cannot comprehend why they would make a three minute announcement about what stops they take or don't take simply to then back down from this plan entirely a minute later. The German public transportation system is a mystery to everyone involved.

07:17
Fully confirmed that's not the case. They just wanted to give everyone on board a heart attack. I certainly didn't hallucinate them saying that they won't stop at Leer, especially because some people got up and left as a result of it.

07:53
Final meal eaten. Today is going to be a good day!

08:33
Just now watched the ZDF Magazin Royale from last week. Did not know they discussed multiple sclerosis there as well! Just to note, the preparation for this study, as well as my involvement, has been going on for multiple months. Would be hilarious if I saw that show and then decided to participate here, as they specifically discussed how behind research on the topic is. However, you cannot join medical studies that easily and quickly (luckily).

First time I've driven to the Netherlands for this study was on the 19th of April, and a lot more happened before then: https://mastodon.de/@ErikUden/112296568004356434

09:16
Just arrived in Leer (East Frisia) and am now waiting at the central bus station for the bus to Groningen! Despite my worries, I have arrived.

10:03
I just drove below the largest pedestrian bridge in Europe! Haha. There was also a nice lake next to it.

10:23
I have just been informed in German with a Dutch accent that we will be driving through a new tunnel for the first time in the history of this bus route!

10:27
Arrived in Groningen. This place has become my second home! Let's hope it stays that way.

10:42
Inside the Bus, now going to the research facility. I should be there about an hour in advance, just how I planned.

11:06
Arrived at the ICON facility at Van Swietenlaan 6, 9728 NZ Groningen, Netherlands. Since my official arrival time was 12:00, I'll have to wait a bit. However, this is much better than being late.

11:24
An assistant came and guided me through everything. My weight was measured, three blood samples were taken, and my wellbeing was checked.

Picture of my last meal before the study. Starting 4 hours before my screening at arrival (12:00), I am not allowed to eat anything, nor drink sugary / caffeine based beverages. For other studies it's sometimes 8 hours or more, so this is pretty mild and I can even have a breakfast the same day.

For the past 6 months I was not allowed to do weed.
For the past 2 weeks I was not allowed to eat poppy seeds.
For the past 48 hours I was not allowed to drink alcohol
In 24 minutes I am no longer allowed to eat anything.

My fast begins soon. I wish a nice breakfast to everyone!

Ja... Das ist warum Ich hier (in Leer) bin.

Day 001 of the Multiple Sklerosis Study
(Compound Day -3) Tuesday on 2024-09-03
Groningen, Netherlands (GMT+1)

I just arrived at the ICON medical research center in Groningen today at around 11:00 AM! As I was an hour too early, I expected to wait longer, however, the staff was very glad about someone arriving early, as not only was I the first to arrive, but also could they prepare all the things for me that later might take longer due to having to do it for more people. At around 11:26 I was given a wristband that can identify me. It shows my name (Erik Uden), PRA Number (0H1W3G), group (1-2b1), and my V number (0056). After that I was shown around, shown my room, shown the beautiful and fun recreation rooms (we have like three separate living rooms with fusball / kicker tables, dart boards, TVs with Netflix etc. on them, and much more).

My blood was taken for three samples, my weight measured, a urine sample was taken too. My mental and physical wellbeing was checked.

At 12:02 I was given a schedule for the coming three weeks, and an emergency wristband was put onto my other arm. I can press it which will alert staff, and if I take it off staff is alerted. So I have to wear it during shower etc.

My schedule for today

12:00 Subject check in

• Urine clinical chemistry
• Body weight
• Blood libal chemistry
• Wellbeing
• Study briefing

12:30 Lunch
14:00 Physician task

• Physical examination (abbreviated)
• Neurological examination
• Brief Psychiatric Rating Scale
• Cannabis Withdrawal Scale
• C-SSRS

15:30 Afternoon snack
17:00 Wellbeing
18:30 Dinner
21:00 Evening snack

I still didn't have the study briefing. I was told it'd gonna happen ~15:30 and was rescheduled.

At around 12:12 I was already done with everything due to being so early, hence I could already go and eat lunch. I did not understand that the Dutch have their main meal in the evening, hence I was a bit disappointed at first. Although the food offered is more than enough, it didn't seem like a full meal. Later, however, I was allowed to choose my dinner for the coming weeks, then I realized when the Dutch have their heavy course.

I had tomato soup, three slices of bread (with cheese, hummus, tomatoes, cucumbers, de ruijter sprinkles, and abrikoos/bosbes fruitbeleg as topping). I drank roiboos tea and milk. There was no limit on how much you could eat, I could've eaten more, but wasn't too hungry. They also have a machine similar to that in Subway to make toast even with cheese etc. on it. That was pretty cool.

During lunch I recall a man loudly proclaiming “spaghetti!” upon seeing the tomato soup. We did not have spaghetti. He did not seem disappointed, however.

I was told that the breakfast is fairly similar with the difference being that you also get Yoghurt.

Around 12:40 I was done with lunch and called my family to inform them that I'm fine and all is going well.

After around 8 minutes, however, I had to abruptly end that conversation in order to participate in a tour of the whole facility, or rather the spaces we're allowed to walk in. I can go in one large circle and don't just have to stay in my part of the clinic. I can even go onto a balcony and breathe fresh air, sometimes there are (guided) tours outside. What is very clear, though, is that we are not allowed to go outside on our own for the entirety of the study. I can have visitors, but for the next 19 days I have to remain on this clinic, hence the many recreation rooms.

I had my physical examination exactly at 14:00. Everything was fine.

Stats of today

Water intake: 3 (glasses)

I've been given the study briefing at 15:12 and a ton of information I'd wish to share. Most importantly that my first lumbar puncture is tomorrow Morning 08:00 AM, and that there is no reserve for this group, so unless we drop out or our blood tests yield bad results, we're all going for this ride.

Regardless, it's 22:35 as I'm writing this. I'm going to bed!

Also to note: my perception of time is completely gone. I feel like I've been here for days already, I just arrived this morning. I did not take any of the compound yet. This is just a general vibe I have in such facilities.

Images of Day 001 (-3) of the Multiple Sklerosis Study!

THERE IS A DOCTOR IN MY SPINE, THIS IS A SPINE TWEET

So... the anesthesia didn't wear off as quickly as they said... Please enjoy this post as much as I'm doing it right now

Day 002 of the Multiple Sklerosis Study
(Compound Day -2) Wednesday on 2024-09-04
Groningen, Netherlands (GMT+1)

My Schedule for Today

Comment: Pre dose CSF sampling

Glossary

• BP = blood pressure
• HR = heart rate
• SB = a meal that is observed for the study

07:15 ECG (3x mesasurements after 10 minutes in supine position)

07:15 Vital signs (BP, HR, T [3x measurements])
07:15 Intravenous catheter (Insert)
07:30 Wellbeing
08:05 Blood sampling

• PL PD 2-AG: Sample 101
• Expl BM: Sample 201
• SR PD 2-AG: Sample 301

08:05 Transfer bloodtubes

• PD CSF: Sample 501 Collection 1

08:10 CSF sampling

• PD CSF: Sample 101
• Collection 1

08:10 Transfer CSF tubes
08:10 Supervision (Start category 2 for CSF sampling)

09:10 Supervision

• Stop category 2 for CSD sampling (1 hour after the CSF sampling of the last subject)

09:25 Breakfast
13:00 Lunch
14:00 Discharge

• Only reserve volunteers
• Time may differ

15:00 Intravenous catheter

• Check

15:30 Afternoon snack
16:10 Cogstate (Neurocognitive Test Battery training)
19:00 Wellbeing
19:30 Dinner
21:30 Evening snack
22:00 Intravenous catheter (Check)

My Stats for Today

Water intake: 7 (glasses, two of which were tea)
Headache from 14:30 to 16:30
Increasing back pain 13:20 to 17:35

My Notes for Today

06:30
Was woken up by assistants and doctors wanting to put ECG stickers on me. Afterwards I was left alone, and thought I had a bit of time left, so I didn't go to the bathroom right away.

07:05
I thought I still had 10 minutes left, as my first appointment for the ECG was in 10 minutes, however, for a good ECG you need to begin resting 10 minutes prior. So I was told to lie down and wait.

07:15
This was my first appointment of the day, the ECG went well. I was lying still for 5 minutes and then a blood pressure check, as well as a different test would be performed.

07:30
Around this time the ECG testing must've been over, so I went to the bathroom and came back. Today was not a day where urine would be sampled, so I could go to the bathroom normally. The bathrooms would be locked on such days, so you had to get a key from the “urine station”. Although annoying, I know sure as hell that I'd forget without such measures.

After coming back we deviated from the schedule a bit. I guess me questioning so many things the day prior made them worry I'd leave the study if I don't get answers. I was walked into an office with the head physician and also “mastermind” of this study. I was generally interested in how the medicine worked, as the study paper us participants got only talked about side effects, the procedure, and legal stuff. The doctor was very interested in explaining every minute detail, although he had to often repeat things in layman's terms for me.

The way I understood it is that the compound we are testing builds an extra coating on the cannabinoid receptors of the central nervous system. They also have something to do with Cannabis, although I have zero idea what they do in regular day to day life. This coating gets destroyed for multiple sklerosis patients, which this drug it could be rebuild. For us, it could potentially build another coating, making the receptors far more sensitive to cannabis. He told me if we were to take cannabis during this study, we would feel the effects 100 times. This explains why many of the side effects on higher doses are similar to that of weed (panic attacks, etc.) It also explains why we had a specific questionnaire regarding weed and how badly we want it. He also told me that weed would have the exact same effect as usually after the 15th of November, the day the study is completely over.

[To Be Continued...]

07:30 (Continuation)

I will inquire more about this compound and how it works soon, but this explanation sufficed for me. Additionally, I was questioned about some of the things I responded in the “wellbeing” section. I had a bad day at work the day prior, so when asked if I was erratic or angry in the past 24 hours (so two days ago), I truthfully responded accordingly. He simply told me that in the future it'd be helpful to give that explanation, otherwise they assume something is wrong with the study, or the doctors are at fault. This is completely fine, I was told. He also told me that this was quite an intense study, 19 days and sometimes 30 or more appointments a day with specific requirements. The reason they're checking so much on our wellbeing is to see whether we're up for that task. I said I am very much feeling up for it.

After the meeting we went right to the wellbeing for this morning, which ended in less than a minute as I was ecstatic and excited to begin the study today!

I came back, my bed was already moved to a different room. The Blohaj I had taken to the hospital was resting on a separate pillow on the stand in front of the bed where they always put documents of the patients. I was told to sit down as they explained the procedure of a lumbar puncture to me...

08:10 (written in hindsight)
The lumbar puncture to do the CSF sample started a bit later than planned, I don't have the exact time in my head. Everything went as planned, other than the fact they still needed to do a cannula as they've forgotten to do so prior. The rather new and inexperienced acting assistants made the intravenous catheter in my right arm, and then took three blood samples. Right afterwards the explanations about a lumbar puncture began. The biggest side effect / danger of this procedure was my own emotions and worry, I was told.

The doctor performing the CSF sampling entered the room. I've seen him before, he was the same do doing my screening about a month ago. He explained everything to me, the posture I needed to be in, why both my blood pressure and other things needs to be live monitored, etc. Apparently they want to know whether I'm about to faint. Probably important if there's a needle in my back. They told me the local anesthesia would be 10 centimeters behind the spine. The idea of a 10 centimeter long metal spike going into my body was scary, but when they showed me how thin it was, I felt a lot better. It was thinner than a hair. The doctor also said that I was the first (of thirty) patients he'd be performing a lumbar puncture on today, and to ease my fear he said that he'd always be the most awake and aware for the first one. He probably says to patients further down the list that he's already well trained and adjusted due to the former procedures. Anyway, it calmed my nerves a lot.

Another interesting piece of lumbar puncture trivia I overheard even during my screening was that if you talk during the procedure the spinal fluid comes out faster. A lumbar puncture isn't a needle extracting a fluid, it's punctuating a small hole in your spine and waiting for a droplet to come out. The vibrations of a patient speaking pushes this droplet out faster. They would collect 5 of these droplets from me, the human body can regenerate about 30 in a day, I was told.

At this point there were 8 people in the room all running around preparing everything.

[To Be Continued...]

08:10 (Continuation)

I was moving into the position, I was scared and shivering, even. I have to sit on the side of the hospital bed, my back bent in order to expose as much area of my lower upper back. In order to rest my head and not keep this position, they gave me a pillow to rest on. The issue was that I would then talk into the pillow and could not see the doctor in front of me to talk to. I suggested the same glasses as in an MRI in order to look at the doctor / anything during the procedure. In order to distract myself I began talking about Mastodon and the Fediverse as they told me they will begin with the anesthesia. A doctor / assistant in the room opened the app store some time during the procedure and even downloaded Mastodon as I would not stop talking about it. They cleaned the “workspace” (my back) more than would be necessary in a hospital, they told me, as they wrapped a sterile plastic bandaid (?) from shoulder to shoulder.

The doctor in front of me saw me grabbing the bed in fear, so they took my hand. The needle with the anesthesia was inserted after a quick notice of that happening. They informed me once more that this was the same anesthesia dentists use. I felt the prick, I felt it moving swiftly through areas of my body I've never welt anything before, then I felt less and less, until I felt nothing in that area. I would simply yap on about Mastodon and sometimes my birth place (east frisia) which also exists I the Netherlands (Friesland), but mainly Mastodon. The doctor in front of me kept asking what investors it has and what target group it was made for. I simply said that it is donation based and made for everybody. I tried to explain many concepts that I probably would've explained a lot better if it wasn't for a needle and god-knows-what to create a hole in spine currently happening behind me. Remember when teachers said “You should know this so well that when I call you at 3 in the morning you can respond to it at an instant?” I at least knew Mastodon so well I could respond to it with a school of doctors running around and yelling in Dutch. I truly wouldn't feel anything except for a push or pull. I didn't even know the procedure had begun. The doctors probably said so, I was just talking on and on about whatever came to mind. The doctor continued holding my hand and asking questions, as an assistant downloaded the app, or at least I think he did, because he loudly exclaimed “it's even on the app store”.

Around this time, I could not tell you when (probably after just a few minutes had passed, though I felt like I've been here either seconds or months), I felt something most humans will probably never feel. An echo inside of my body, originating not from my vocal chords, but my lower back. It began as a small jerk, as if something was pulled, yet it snapped back, and as a result I felt every bone once. An echo yet the chamber was the insides of my boney. The feeling didn't hurt, not at all, but it was disturbing and fascinating. The doctors said that it was nothing.

At this moment I had the idea of whether singing would help push the droplets of spinal fluid out faster, or whether something like that has been tried. I would want to ask a doctor whether we should try something like that next time. Although thinking about it now, I am not sure what to sing or whether I'd have the composure to sing during such a procedure.

Before I knew it, the main guy performing the sampling said “okay, I'm going to take the needle out” and all I could think about was “THERE WAS A NEEDLE INSIDE OF ME THIS WHOLE TIME?” I felt nothing. Really nothing. He pulled the needle out and I may have felt a little sting when it moved past my skin, yet I felt no pain, or at least far less pain than the cannula caused.

[To Be Continued]

08:10 (Continuation)

At this point I noticed my leg shivering from being so tensed up the entire time. I calmed myself down. According to the doctors everything went very well. Additionally, only 7 minutes had passed since I entered this room. That made zero sense to me, as so much had happened. After everything was done, a bandaid was put over the place where my skin was pricked, and I was helped to lay down on my stomach. I did everything super slowly. Cables where running across my body, as my cannula was on my right arm, they needed to have the blood pressure taken on the left arm, and the (ECG?) cables with suction cups were still running across my chest. Three assistants helped me turn around and lay on my stomach. I felt a bit dizzy as my body was processing the anesthesia. I thought about Mastodon a lot during this time and even felt like I was in a dream like state. I was certainly awake, but time flew by and the world was entertaining. I couldn't believe this was the procedure. I didn't feel anything and thought they were just doing whatever in preparation to it. I told the doctors how I felt, that everything was fine, no pain etc.

They drove the bed to my place and told me to continue lying down like this for 30 minutes. A doctor was waiting with me in case anything happens. Even though the bed was standing still, I felt like I was flying forward. I was told I couldn't have a pillow, so my head was on the same height as my back. I dreamed on. I had no idea where this pillow would be put, but later I was positively surprised to learn where it was. I felt very happy about myself and my life. Maybe an effect of the anesthesia, but maybe just overall. I'm happy about where I am in life, because I can even withstand such a procedure.

30 minutes passed and I was told to lie on my back. I was now helped by one doctor, I could do much myself. I could've probably done it the first time and now without help, I can feel all parts of my body and move them, I am just trying to be extra cautious as they suggested. They were very happy about me taking it seriously and not jumping around or doing erratic movements (I was told that some patients do that).

Now lying on my back left me wondering and daydreaming once more. Although I felt much better and awake. I would fully wake up during this time. I now saw they gave the blohaj its pillow back and laid it on top of the patient information stand at the end of my bed, giving the blohaj its own bed. I found that quite amusing. I asked the doctor whether they've done so on purpose because I didn't do it, and she said “that's exactly what someone who did this would say.”

Sooner than later there was a doctor with me who asked me how I was doing and that my time has passed. After I said I was fine, he began talking about migrants completely out of nowhere. Still in a dizzy state, but slowly becoming more aware of the situation, I listened to his babbling...

“Do you feel well? Yeah? Do your parents live in Germany or America? Germany, huh... You know the migrants coming to Europe, they're all rich. They wear expensive clothes, have expensive watches. They're the ones that can afford a ticket. With the elections in Germany you can really see how the will of the people is represented. We need to go there and help them in Africa, not here, like Russia did in...”

Very fascinating stuff, really. I didn't ask nor could I care any less about this. It also wasn't an isolated room, so surrounding patients just began laughing and we later talked about it very humorously considering what an odd fella would start a conversation like this. Or how inappropriate it was to do this. Or how dumb this opinion was.

[To Be Continued...]

08:10 (Continuation)

Some assistants took notice, they only came to me once the doctor was over with his ramblings, and asked me what that was about. I told them that he just randomly started talking, and they said “Oh, he does that sometimes, but usually not like this. Maybe because you're from Germany he wanted to talk about the elections” SURE, whatever. I'm sure the assistant is also worried about her job as much as I'm worried about my wellbeing if we'd both mobilize against this prick. Regardless, I am sure he won't come to me to talk about this again, because I just showed every sign of disinterest one can show, another patient in the room said.

10:00
Around this time I went to the breakfast. Every one of our breakfasts is monitored, so I got three slices of bread, two savory pieces of topping (spicy hummus and cheese), as well as two sweet toppings (sprinkles and jam). The three slices of bread also included two packets of butter. I was also supposed to eat one circular rusk and drink one cup of tea. This was a requirement for the study. There would be days where all meals are monitored.

Just as I sat down to feast, the one (of us five) girl participants told me that she got less to eat. Apparently, as a woman, you'd get only two slices of bread and one sweet topping. That's ridiculous. I'm a twink, she has muscles. It makes zero sense to give out food by “gender”, especially if you have the data to do it by personal needs. She told me she was still hungry after eating. I told her we should revolt against this. She laughed.

Since they only do one lumbar puncture at a time, most of the other patients weren't done. Actually, none of them were done. They were either now also lying in bed, or currently doing the procedure. I was the first of our group and the firs not the day. I have the first beds, I'll be the first for everything on our schedule. They'll always have to add 15-30 minutes for everything we do in order to know when it's their turn. The reason two of my patient mates were sitting here at the cafeteria with me is because their CSF sampling would happen after breakfast.

10:44
After breakfast was done, I walked back to my room, had a work call, and rested a bit. A slight pain, rather a soft feeling of a push with a minor pain in the skin above the puncture, came back once the anesthesia fully wore off. Since then I've been lying in bed, documenting this day up until now, and just thought about everything. What a great day today was!

Another thing we talked about yesterday was the fact we were only five volunteers / patients. The study papers suggested 8, two of which would get a placebo. We're now only five. When told that there were no reserves, we assumed not enough people came to have more people than needed, however currently it seems like not enough people came overall. Is it the fear of the lumbar puncture? Is it the study overall as changes to the brain / central nervous system can be extra dangerous? Was it the many appointments in advance such as MRI scans or not being allowed to take weed? Is there something we don't know? These are the questions that go through your head when preparing for the coming days.

To be Continued...

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

Day 003 of the Multiple Sklerosis Study
(Compound Day -1) Thursday on 2024-09-05
Groningen, Netherlands (GMT+1)

My Schedule for Today

Glossary

• BP = blood pressure
• HR = heart rate

06:00 Telemetry (Connect)
06:30 Intravenous catheter (Check)
07:30 Wellbeing
08:10 SB Breakfast
08:40 Telemetry (Start)
08:40 Cogstate (Neurocognitive Test Battery)
09:20 Telemetry (Start subject lay down [-24h])
09:30 Telemetry (Make ECG print [3x])
09:35 Telemetry (Stop subject lay down [-24h])
09:35 Vital signs (BP, HR)
09:50 Telemetry (Start subject lay down [-23.5h])
10:00 Telemetry (Make ECG print [3x])
10:05 Telemetry (Stop subject lay down [-23.5h])
10:05 Vital signs (BP, HR)
10:20 Telemetry (Start subject lay down [-23h])
10:30 Telemetry (Make ECG print [3x])
10:35 Telemetry (Stop subject lay down [-23h])
10:35 Vital signs (BP, HR)
11:20 Telemetry (Start subject lay down [-22h]
11:30 Telemetry (Make ECG print [3x])
11:35 Telemetry
11:35 Stop subject lay down: [-22h])
11:35 Vital signs (BP, HR)
12:20 Telemetry (Start subject lay down [-21h])
12:30 Telemetry (Make ECG print [3x])
12:35 Telemetry (Stop subject lay down [-21h])
12:35 Vital signs (BP, HR)
12:40 Cogstate (Neurocognitive Test Battery)
13:20 Telemetry (Start subject lay down [-20h])
13:30 Telemetry (Make ECG print [3x]
13:35 Telemetry (Stop subject lay down [-20h])
13:35 Vital signs (BP, HR)
13:40 SB Lunch
15:00 Intravenous catheter (Check)
15:20 Telemetry (Start subject lay down [-18h])
15:30 Telemetry (Make ECG print [3x])
15:30 Telemetry (Continue)
15:35 Telemetry (Stop subject lay down [-18])
15:35 Vital signs (BP, HR)
19:00 Wellbeing
19:20 Telemetry (Start subject lay down [-14h])
19:30 Telemetry (Make ECG print [3x])
19:35 Telemetry (Stop subject lay down [-14h])
19:35 Vital signs (BP HR)
19:40 SB Dinner
21:20 Telemetry (Start subject lay down [-12h])
21:30 Telemetry (Make ECG print [3x])
21:35 Telemetry (Stop subject lay down [-12h])
21:35 Vital signs (BP, HR)
22:00 Intravenous catheter (Check)
23:15 Telemetry (Continue)

My Stats for Today

Water intake: 7 (glasses, two tea, one soup)
09:50 - 10:20 mild headache (2/10)
11:30 - 12:54 mild headache (3/10)
20:22 - 20:25 strong headache (7/10)
20:25 - 20:43 medium headache (4/10)
20:43 - 21:03 strong headache (7/10)
21:03 - 21:15 soft headache going away (1/10)

Notes of Today

6:20
Awoken by staff to put ECG suction cups on (in a new configuration). Leaving me once again looking like I was hugged by an octopus.

That morning I realized that the pain of yesterday's lumbar puncture was completely gone. I don't feel anything. No pain, nothing. I was amazed.

This time it wasn't a normal ECG, it's a telemetry device called “Surveyor”. It will follow me around for the rest of the next 24 hours and monitor my every move, this is why everything needs to happen on a very rigid schedule today (every food intake, every test etc. has to start the exact minute that it's on the schedule).

08:15
Told to eat a piece of bread because my eating time has begun. Just a piece, because I was a bit(e) late.

Also an assistant informed me I needed to take my medicine / compound on time. I told them that I thought we would only take the compound tomorrow (on Friday) and that that would be the first day. She looked into some files, saw that I was right, and then told me that I just need to finish my breakfast. I was confused with a different study group (despite them checking my name and everything first, as we need wristbands confirming out identity everywhere).

08:35
An assistant came to my bed wanting to do the wellbeing with me, which has already been done. I informed them of that, then the assistant realized they were with the wrong study group and left.

To be continued...

08:40
I did the cogstate test for the first time for real! It was much quicker, because I did things much better than the first time. Having done it yesterday while I had a headache and really couldn't concentrate wasn't too nice. I still think I was at the top of my abilities, but given the clinical circumstances, it's the best I can do. Now they can measure whether the medicine tomorrow has any effect on my cognitive state.

09:48
I spent my time lying down thinking about my beliefs and my life. When do you ever take the time to rethink everything? To question whether what you are doing is right, or how you've come to the point where you are today? With all of these distractions at our disposal it's much easier to stare at a screen in case any cohesive thought may form. I saw this a very good way of spending my many lay downs, as I was simply supposed to lie in bed without reading, watching, or doing anything, whilst staying awake. Just you left alone with your own thoughts. I'm glad I can still do that and be alone with myself.

Also they just cleaned the catheter now, not early in the morning. Liars!

11:38
They needed to use a second blood pressure measuring device because mine would keep pumping around my arm and wouldn't stop. I broke it lol.

Also during one of the lay downs I dropped my Blohaj on the floor and the three surrounding assistants said “noooo” and one picked it up and brought it back onto my bed as I wasn't allowed to move.

12:54
Just had my second cognitive test of the day. I'm not getting better at them through skill, which is a good thing and shows how the test works.

I also didn't explain much what this day and a “lay down” was about. Basically the entire day is just measuring a constant ECG and to get the best results we need to lie still in bed every half an hour for half an hour. It's quiet and nice time.

I'm excited to take the first dose of the compound tomorrow!

22:56
I had many irritating headaches today! Can't really explain why. Didn't get the medicine yet. May have been the environment or yesterday's procedure... I really understand why they conduct studies like this! If I would've gotten the medicine on day one, I would've claimed that a side effect of the medicine was headaches! Regardless, it wasn't too bad, though for someone who never really had headaches in their life, it was quite an experience. Especially weird because my testing today was “lying in bed” (how stressful!!).

23:33
I used a stapler to staple my study schedule together. It was falling apart, and now it's my little booklet!!

the what sauce?

In case you are not aware of the racial segregation Roma people are facing in Europe:

:youtube: https://youtu.be/tmx0uNrFX88

A very good video on the topic by Adam Something. Of course changing the name of a sauce doesn't change anything regarding these people's persecution, I just think it's a wake up call for many in our world to see how blatant and ingrained such racism is in our society. I began a discussion about this here and many people were shocked to learn what Roma people are going through, or have historically faced.

They're gonna draw blood tomorrow 12 times. ICON is a vampire and I am a tiny little lab rat :ratcrown: