MS blog October 2023

25/9/23

This week of this, bad sleep, fatigue, affecting speech - #Dysphasia - and fatigue linked problems like forgetting to do certain things, eg. Download Toon ticket properly!

Tired.

04/10/23 (Wednesday)

Again bad sleeps, bad #fatigue. Here's the thing. More notable 'cognitive overthinking' in that I am not on the money. Yet, was fine for the #MS #Zoom on Monday night.

And starting to unintentionally upset Catherine, and therefore me too.

FB post:

#Tysabri

At time of writing, I am pretty bloody next-level-tired. Or feeling fatigued, in the #MS world. Those who know that; know.

Yes, I AM saying that #MS #Fatigue IS different to ‘just’ being tired. Who am I to say that? Someone who has lived with the twat (#MultipleSclerosis) for maybe 26 years now. Maybe more. I don’t know.

So, #Tysabri. Well I started with this amazing #DMD (disease modifying drug) over 13 years ago, and it “made me a new man” as I said then and have said umpteen times since.

Here’s the but. Without too much medical spiel, a combination of a risk factor (of possible death) with Tysabri, a change in its positive effects on and with me, and now that there are other options available that didn’t even exist then, it may be time to look seriously into a change.

Time to call the specialists I think!

#MRI booked for November may help.

19/10/23

After the negative text above, 4/10/23, with Tysabri worry, I am right now (while getting magic juice) in receipt of infusion 160.

The good news, is that having had that (⬆️) shit spell, I do feel considerably better in fairness.

However, I am also mindful of dysarthria still here.

Booked MS nurse appointments and due MRI should help further.

The good infusion news is that the titre score has come down (to 1.20 from 1.42). No pun, but that's a Tysabri positive.

Living with MS is a journey!

29/10/23

During the night (was about 12:30), double vision. Couldn’t read my phone (lol) this was worse than the previous night.

Change to varifocals a/the problem? Only got them on the 28th, and wore them for a few hours only - getting used to them.

30/10/23

A bit of hyperextension noted. Have been a few notifications across the last few months too.

My walking was mentioned last week by a best mate. Shit happens! Perfection search or not. Meh MS.

Comments

MS

Living with MS Edinburgh *This is my bit blog and therefore my thoughts/options * on Living with MS Edinburgh being an information day for anyone affected by MS that I happily attended, and will be more about the day than the travel to and from it ! This event was held in the Sheraton Hotel which was beautifully laid out, in a spacious floor in the hotel with many orange-clad volunteers supporting the 150 attendees. MS Scotland The area in the hotel had been planned well, wasn’t too big or small offering fine accessibility and had plenty of MS stuff throughout! So what was the order of the day, what happened? It began with a welcome from the chair, Mary Douglas from the MS Society Scotland (9:45 – 10:00) welcoming us and touching on what was ahead. Breaking Boundaries in MS Research , was started straight after ( ~ 10:00) by Becky Driscoll. A fairly generic(ish) overview (IMO!) of MS initially, presented very well. The content was detailed and shows/sh...

Is what it is

Is what it is IT IT IT! There is no “It” in the title. Well, apart from actually making up the word “tITtle”! Not a mistake. When chatting about whatever, and #MS comes up as pretty usual when at an MS Social, that phrase is an acknowledgement of acceptance (canny phrase itself!). By saying it, we know that we do know what we/it mean/s. Good repeatability there! For myself, even by voicing it with another understanding MSer, it’s like a ‘mutual respectful recognition’ sharing. Acceptance. Here’s a tangent. I have recently started with Ocrevus as my DMD . So far (literally a couple of months as of typing) so good. It is doing it’s thing. I’m no better, and much more importantly no worse. Yes, I have had questions about my Ocrevus, due to the lowering of one’s immune system, and feeling terrible for a while. But! This time of year everybody seems to pick up a ‘bug’ or 2. Even some bloody COVID – I didn’t – phew. SAD. That’s S.A.D. “Seasonal affective disorder (SAD) is...

Ocrevus

Ocrevus . Notes 1 The infusion was completed at 1pm, and I was asked to wait for 15 minutes after the cannula had been removed. I was told to take it easy for the rest of the day, that'd I'd be tired. Body not used to the new drug, nor my mind, given that I had been anxious about #Ocrevus day. Ok then, I'll accept a lazy day. Was planning a curry takeaway anyway! I am tired. A few nights of bad / poor sleep. Ocrevus. Notes 2 Second infusion (second half dose) done by 1ish. Then again asked to rest for the day. Yes, as per, I was tired. #Anxiety due to an earlier taxi booking (for 07:20), with the small alarm fear! And also a few wake-ups during the night. Usual, but! Prepared with laptop, phone (obviously), headphones, sarnie, bottle of water, and chargers in case. And a BBCi downloaded film. The same as my first unknown Ocrevus trip. Slower start than last infusion, but after the paracetamols and antihistamine, the weak steroid infusion did its thing for half an hour; wi...

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