Thursday, 23 September 2021

excellent service, would recommend

Image showing the sections of the lumbar spine
image borrowed from

So my first ever lumbar puncture was... fine, actually. 

I'd been really worried about it - like two-sleepless-nights worried. And I don't think that's entirely unreasonable. There's just something undeniably weird about the idea of someone putting a needle into your spine. 

What really took me by surprise when I got to the hospital was that I didn't lie down for the procedure. I just sat on the edge of a bed and leant forward onto one of those wheeled bed-tables. 

After a bit of feeling around and the SHARP SCRATCH of the local anaesthetic, the actual needle which went in between L4 and L5 felt more like someone was digging a knuckle into my lower back. There was one odd moment where there was a burning sensation in (apologies, there's no other way of saying this) my balls. Unsurprising when they're rooting around in a cluster of nerves, I guess. 

The most disturbing bit was the noise the student nurse who was observing made when she saw the fluid coming out. A bit worrying, but then I did make a point of not seeing the size of needle they were using. I assume it looked worse than it felt. 

After coming out of the gates at a tremendous pace, things then slowed down to a dribble when filling the second and third vials. But after about 20/30 minutes it was over. 

This was when the headache kicked in. Man, that was something else. The doctor explained why it had started and the reason was one of those blindingly obvious things that you feel stupid for not thinking of yourself (if you're an idiot like me). 

As in: Spinal fluid goes around the brain. If you remove fluid and the subject stands (or in my case sits) up, the fluid will flow down, leaving the brain exposed. Fixed by a big old glass of water and two paracetamol, followed by an hour lying down with observations every 15 minutes. 

Which also included the collection of a freakish amount of blood. Obviously they needed to take some blood as part of my LP procedure. But the MS nurse thought that, while I was there and cannulated, it would be worth doing all of the tests required for each of the three DMTs I'm looking at. Pretty smart. And it saves me having to go back to the hospital for more tests further down the line.

So after filling TWELVE VIALS of blood, and being observed while walking, I was allowed to go home.

My final thoughts? It really wasn't anywhere near as bad I thought it would be. But, y'know: needle; spine; puncture

One thing. While I know that's the way a lot of people come to their initial diagnosis, I'm SO GLAD that mine didn't come through this procedure. At that point, everything was so unnerving and unknown.

My first MRI was bad enough. But I would've totally freaked out if the doctor had said, "Just to make sure we know what we're dealing with, I think we should drain off some of your spinal fluid." 

Having said all that, if you're in the position of needing to have a lumbar puncture procedure, in my experience it really isn't that scary. Talk to the doctors and nurses, explain your perfectly rational fears, and take comfort from the fact that you're not alone.

For example, one of my MS Nurses said that the one time that she nearly fainted while training to be nurse was when she witnessed a lumbar puncture.

As I said: needle; spine; puncture. It's not natural, is it?

Tuesday, 21 September 2021

ah, mr. lumbar puncture - i've been expecting you

16 years after my MS diagnosis, I'm having my first ever lumbar puncture this week.

How have I managed to avoid one so long?

Well, my diagnosis was arrived at after looking at years of medical history - misfiring neurons wrongly labelled as trapped nerves, mostly - and eventually an MRI. 

My lumbar puncture is to see the extent to which the JC virus has invaded my spine. Knowing if this is the case will enable me to make a choice about my next MS DMT. 

At present this choice comes down to three options - Mavenclad (cladribine), Fingolimod (Gilenya) or Ocrevus (ocrelizumab). So two oral meds and one infusion.

Actually, if this test shows the JC virus, I'll be down to a choice of one. 

The main thing that's worrying me about all of this is that eventually I'm going to run out of possible treatments, right? Tysabri is at the top of the tree with regards to efficacy, Ocrevus is on a level with it. So where do I go from here? 

To use a computer gaming metaphor, what happens when I compete the final MS treatment level? Is there a BOSS level which defeats all comers? Or will it just be a disappointing credit sequence?

Most importantly, will this treatment ruin my favourite film of all time?

Friday, 3 September 2021

help me make it through the night

Here's a thing. I've noticed that whenever I drink white wine in the evening I have to get up for a wee in the middle of the night. 

Now. I'm well aware this might not be exactly news to some of you. But hold up.

I'm still using intermittent self-catheterisation several times a day. And even if I have a good "drain" (sorry!) before bed, I still need to get up to go to the loo after drinking white wine.

However, if I drink red wine or beer, I can and do sleep through with no problem. And I'm not totally desperate for the bog when I wake up. 

Full disclosure: I've never been a big drinker. I fact, I didn't even start drinking properly until my second year at University, which was when I finally got the taste for it.

Incidentally, it always seemed silly to me that there are things that you have to "work hard" at in order to like them. Like smoking, drinking whiskey and listening to Wagner. I think that the reason I finally got to like drinking alcohol was because of all the fags and weed I was smoking. Who can say.

Anyway, I'm not saying that we've been drinking more than normal (although we have just moved house). But I do think I need to undertake more extensive research.

But has anyone else noticed that this is an issue for them or not, depending on what they've been drinking?

And, if there any brewologists out there, is there a scientific basis for what I've noticed? Or is it all in my head? 

And finally, if anyone is having issues with their bladder and the idea of self-catheterisation is horrific to them, please hear this. 

For me, it has been life-changing. Yes, it's undoubtedly a weird thing at first. But in my experience, after an initial period it simply becomes a question of logistics and preparation. And the benefits of uninterrupted sleep and the possibility of travel far outweigh the "ick." 

Here endeth the lesson.