Lemtrada – 4 weeks on

It’s now four weeks since I finished treatment and got out of hospital. It felt that now was a good time for another update on how things are progressing.

This week I’ve had my first of (at least) 60 blood tests. I say ‘at least’ because the monthly blood monitoring goes from first treatment, to four years post treatment. So assuming I only need two rounds of treatment, that’s five years of monthly blood tests. 

On this topic – I feel so lucky to live where I do. My MS nurse holds surgeries extremely regularly at the hospital two miles from my house. Others who have had this treatment have had to trek to hospitals miles away, or had to go to their GP and ‘hope’ it gets sent to the right place for analysis. 

Either I’m getting hardened to this blood test stuff, or the woman at the hospital was amazing! I barely felt a scratch when she stuck the needle in. If I was scared of needles pre having MS, I definitely am not anymore.

The nurse I saw (Danny was elsewhere) confirmed that my urine was fine and now it’s just a case of waiting on my blood results. I’m heading to my GP later today to set up patient access to my medical records so that I can check my results out each month.

In other news, today feels pretty momentous simply for the fact that tonight I’ll be taking my very last antiviral and antibiotic. I still need to stick with the listeria diet for a little longer which is a pain because all I really want is dippy eggs and soldiers with a side of pate 😂. The listeria diet is basically avoiding food which carries a high risk of listeriosis. This could prove fatal whilst my immune system is down. The diet is the same as a pregnancy diet (although I can confirm I can still drink alcohol, yay!) 

I’ve spent a couple of days down at the MS Therapy Centre in Wigan too (check out their new website here if you’re interested). I’ve met lots of new faces and they’re all bonkers so it’s been time really well spent. 

So how does it feel four weeks post Lem? 

I’ve mentioned before that my symptoms get worse in heat. That means that it’s really difficult to tell if the niggles I’m feeling are because of this insane weather we’ve been having, or a fallout of saying bye to my immune system!
Some of the symptoms that I have day to day are definitely worse still for the time being but from what I’ve heard that can take a couple of months to sort itself. In particular it’s the tingling which has progressed to a light burning sensation in my legs and yesterday I was having an extremely clumsy day, walking into EVERYTHING! They’re not ones that I’m not used to and that aren’t manageable so it’s not a huge matter of concern.

The fatigue is nowhere near as bad as it was three weeks ago. I’ve been getting through the day without a nana nap for two weeks now, although I am still having days where I feel totally wiped out. I helped out with some fund raising for the centre last Saturday and I definitely felt the after effects on Sunday. 

Because of the fact that post treatment the majority of symptoms flare up for a bit, I’ve discovered some “new” ones. They’re not really anything new, but they’re things that weren’t quite right that I never really associated with MS. 
An example of this is some spasticity in my hands and wrists. Spasticity is where certain muscles are in a permanent state of contraction. This then causes stiffness and tightness which can interfere with normal movement or gait. When I get my nails done I irritate the life out of my technician as my fingers don’t properly lie flat next to each other. They instead rest on each other so I ALWAYS end up smudging the polish. It also explains why I’m bloody useless at rifling through my change in my purse at the till in the shop. My wrists feel super weak, crack like mad, and I just can’t do stuff quickly. Let me tell you, contactless is a God send!

See how the little finger slightly overlaps my ring finger?

The rash has reappeared this week, although not in the same force as it did during my infusion, but I feel fine. Debatably, better than. I think everyone (myself included!) is surprised at how ok I actually am considering the beating up my body has taken. The nurse I spoke to was definitely surprised at how quickly I’ve recovered, and I even admitted that I was scared it hadn’t properly worked. She assured me that that was highly unlikely and I’ll see that when I get my blood test results. She also reassured me that as my white blood cells are gone, and this is what attacks my nerves, it’s highly unlikely that a relapse is going to happen anytime soon.

So just another week and I’ll hopefully be going back to work providing I feel ok in the coming week. Although I’ve mostly managed to maintain a good routine, I’m going to try my hardest to get used to the alarm again. This is going to be the tricky bit because the energy it takes me to get up and ready in the morning can be huge (see more that explains this here). 

What I can safely say at this point is, I definitely have no regrets so far, and I hope that’s something I can continue to say! 

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