MS blog October 2023

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 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.




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