This year has definitely been easier than last year was! My younger sister came to stay for a week and helped me with everything which did make life that little bit easier. She did the same last year too; what a star! Thanks Flea!! Don’t get me wrong, I’m super tired and could really do with doing very little for a while (or my sister back? haha) but I’ve been back at work for a week now and it didn’t kill me!
I have had a lot of tingling in my limbs (a.k.a. altered sensation), not something I’m that used to, and headaches on and off…but apart from that & a couple of little blips, it’s been ok.
All I have to do now is avoid catching anything and I’ll be happy!
Here’s a quick update to changes to the treatment plan for this year:
1) The ‘anti-listeria’ diet we are asked to follow has been extended to a month before the treatment starts. We had of course been told this prior to this meeting, but she explained that it was because there had been a death caused by listeria in a patient receiving Alemtuzumab. (Thank goodness I’d followed the instructions, hey!)
2) We would be taking a second tablet (in addition to the acyclovir) home with us this year; it’s an antibiotic called Co-Trimoxazole (2x480mg a day for 30 days, each containing: 80mg Trimethoprim & 400mg Sulfamethoxazole), which has been shown to decrease the risk of getting ill whilst our immune systems are very low.
So, for the second round of Alemtuzumab I had 3 days of treatment. I’m not entirely certain why it’s shorter than the first year, but I do know that this is the standard protocol. This year wasn’t very different from last year except, I suppose, that it was a little easier. I’m not sure if that was because I knew what to expect, or that fewer days meant that my body felt less bombarded (or maybe a bit of both?), but either way, I was glad for it!
(This is Morriston the sloth (named after the hospital that my neuro team are based in) sitting in the chair that was my home for the three days of my treatment this year.)
Day one
We started today with some introductions: Mark & I had a new buddy this year called Jenny (also in her 2nd year) and we all met the new neurologist that has been added to our neuro team; both were great. We then each had a little consultation with said neuro who just went through a few things and did a quick series of tests. All we had to do then was wait for the results of our urine tests, take an antiviral & antihistamine, to be cannulated and we were good to go.
There was around an hour of steroids and then 4ish hours of the Alemtuzumab, followed by 2 hours of observation and a blood test. We had half-hourly obs all day and we mainly looked after by 2 nurses. The unit we were in was being shared with the renal department so there was a steady stream of their patients coming in and out for various treatments all day.
I spent this day in quite a lot of discomfort but I knew it was to be expected. The nurses gave me some paracetamol and said that it was good because it meant it was working. At the time all I wanted to do was cry, but looking back on it that was the worst part of the treatment this year and it really wasn’t that bad.
Mum & I stayed in a hotel again as it was much easier and safer to be near the hospital. I was pretty tired after the first day but when trying to sleep I became VERY restless.
(Cannula number 1)
Day two
I had kept the cannula in from the day before so today started a lot faster than the first. All I had to do was wait for my urine test to show all clear and for the blood results from day one to confirm that the treatment had done what it was meant to do. Both were fine, so, after taking an antiviral and antihistamine again, off we went. I had a headache this day and was quite sleepy, but that was pretty much it.
(Half of the obs sheet from day 2)
Day three
I’d kept the cannula in again for this day but about 30 minutes into the steroids it had to be taken out and replaced on the other side. It was a little painful and the infusion seemed to be going quite slowly so it was decided that it was best to change it. Turned out that was a good idea as when it came out the tube was so bent they didn’t even know how it had been going through in the first place (haha). Apart from that the same morning routine from the day before was followed. I was a little flushed this day and had a bit of a temperature but they both went down by the end of the day. I was a lot more tired so spent a lot of the day in and out of sleeping. I did get a small rash, but NOTHING compared to the one I got last year!
So, that was Round 2…hopefully my last! I have a check-up appointment with one of my neurologists in a month and will have an MRI in June(ish) and then we’ll go from there. Keep your fingers crossed for me!
I just wanted to add a quick thank you to my Mum, sisters and friends that looked after me and messaged me throughout these 3 days! Oh, and the awesome neuro team at Morriston (thank goodness for the NHS!!)!
I haven’t had to update this in a while, which has been good, in this case no news really has been good(ish) news.
So what’s happened since last April? To sum up:
> I caught so many bugs it was unbelievable, but none of them caused any hospital visits and as my immune system regained its strength I did stop catching everything.
> I have Trigeminal Neuralgia & take Carbamazapine to stop it from causing me pain, which coincidentally has also seemed to help my back problems.
> I still have to use crutches every so often, but much less than I was starting to use them.
> I’ve had 3 mysterious skin allergic reactions (as shown in previous post), around 10 issues with my eye - itching/pain - that was stopped by piriton - & now have very dry skin/eczema on my eyelids (Aveeno cream clears it up within 24 each time). The GP I saw has suggested that this is all an allergic reaction to the TN meds, but the TN is definitely still worse than all of that. I’m yet to see if my neuro agrees…
> I had a 2 week spell of headaches behind the eyes couple with some mild vertigo recently, but optician couldn’t find an issue, neither could the GP. Again, yet to really bring it up with anyone on the MS team.
> Fatigue, stiffness and memory issues are unfortunately still ever present, but I think they might be something that stick with me for ever to be honest.
> There have (of course) been other issues here & there, but right now none spring to mind…
I’ve got my date for round 2 of my treatment: 24-26/04/17. To be honest, I’ve had it for a while but have been forgetting to update this blog…
I have so many emotions running around inside of me I’m not sure where to start, all I can say for certain is that I’ll be glad when it’s done with…until then, wish me luck!
First things first, my 6 month lymphocyte count is 0.9 - nearly within ‘normal’ range according to my neurologist and is definitely a good thing.
My appointment gave me the opportunity to bring up a few things I’d been worried about/experiencing. Nothing too bad, just a few things that may need more attention next year.
I was also able to catch up briefly with Mark (we had Lemtrada at the same time) which was good. He’s doing well too. We both have to have the Flu jab this year - something I’m definitely not looking forward to.
I’m now taking 50 mg of Carbamazapine twice daily to help with the trigeminal neuralgia - something which my neuro said was a MS thing, but when someone with MS has it, it’s a bit different (it’s caused by the demyelination). It’s being caused by one of my original lesions, so nothing to worrying about on that end (in other words: it’s not new).
It turns out that the face pain I’ve been having is something called trigeminal neuralgia. It had become more frequent so I finally went to the doctors. It isn’t necessarily to do with MS or the treatment, but it is VERY common in MSers. At the moment I’m not taking anything for it but we’ll see a couple of weeks from now.
I just thought I’d write a quick update, I suppose this one is more for me (so I have a chance of remembering)…
On 3 or 4 separate occasions (including my birthday) I had a HORRIBLE pain down the right side of my face. The longest ‘attack’ lasted on/off for about 1.5 hours, but it would appear that rotating the skin near my temples helped disperse it, but not always completely. Like this:
I’ve also had a bit more trouble with my legs and back. Stiffness & pain have been an issue for over a year now, but it was ‘getting better’. I’m not sure if it’s worse than it was, or I that I had gotten so use to not having the problem that having them back just feels worse. I am waking up with some stiffness now which is definitely new (it used to ‘disappear’ overnight).
My memory seems to have gone downhill a bit too, but that was rubbish to start with, MS aside… The fatigue is also a big problem, but I think that’s probably pretty normal to be fair.
My consultant did say that things might have to go down hill a little before getting better. I’m always being reminded that Lemtrada isn’t a quick fix and believe me, I know it!
I had my first successful Facetime urine dipstick test today! This might seem like a strange thing to be excited about, but my phone wouldn’t work last month so getting the test done ended with me going to my local minor injuries department just to be able to get it done - what a palaver!
Just in case you’re wondering….
I was given a bottle of dipsticks and a print out of the chart to compare my results with. My MS specialist nurse then contacts me via video chat so she can see the results herself too. I do the test and compare the results, telling my nurse (Bernie) what I think they are.
I’m pretty used to doing this type of thing as I have a similar test for the water in my fish tank, so this works quite well. Also, it save at least 2 hours driving/missing work/money so is a great way to do this test!
Luckily the second round of antivirals worked it’s magic and I’ve been shingle free for a while now. There’s also been nothing new to report and I haven’t heard anything about the results of my blood tests/etc. which I’m hoping is a good sign!
Still very fatigued, but coping well apart from that.
I’m back on the anti-virals again as it would appear I have shingles - poo. I actually feel ok to be honest, but where the little scabs are is very sore to the touch and a little itchy. I noticed 5 tiny little see-through blister things in a line on the right side of my tummy which were very painful to touch. We didn’t know what they were so ‘burst’ them (they were tiny so this didn’t take too much effort), but this morning they were still on the painful side so decided to call the out of hours doctor (darn bank holidays). I’m now on 800mg of aciclovir 5 times a day for 7 days. What a way to spend a lovely sunny day! Haha
Well, at least that’s what the letter I received suggested as apparently there is absolutely nothing wrong with me accept from a small amount of fatigue. Who knew?!
Not qualifying for PIP (I was awarded 0 points in both sections) was something I was expecting, maybe not to that level, but I imagined they’d turn me down. However, writing a letter which basically calls me a liar (”You said you have difficulties…I have decided [insert phrase here saying I’m wrong”) made me angry and sad, so I did something about it. I sent them a letter asking for the evidence they used to come to this decision and asked them to reconsider (the next step before appeal), so we’ll see where that gets me.
I had my first check up since treatment. Went to the hospital an hour early, as instructed by my neuro, to have bloods done. There was an hour delay (nothing new there haha) so thought my results would definitely be there for my actual appointment…I was wrong! So I’m not entirely sure how my immune system is doing, or what my t-cell count is, but I haven’t heard anything from my neuro team since, so I’m thinking the results couldn’t have been that bad.
On the plus side I got to catch up with Mark and compare how we were. Whilst in the waiting room met a guy that had just finished Lemtrada (so 5 years on) who was kind enough to answer all the questions I kept on throwing at him. We also had a laugh at how warped our humour has become since being diagnosed with MS, something which hadn’t occured to me before that, but I suppose its par for the course.
Oh, and I was taught how to read a urine dipstick test, so there’s that…
Symptom udate: I am still having headaches which neuro says sound like migraines (which I have had in the past). Still VERY tired, possibly less over the last week, but could be that I’m just getting used to this level. My memory and (spoken) word recall seems to be getting worse and the ability to properly concentrate seems to have stopped for the time being. Altered sensation here and there with a bit of stiffness in my limbs - mainly left side (all happened before treatment too). On a good note, I have finally gotten rid if the cold I had (yay!).
Becoming chronically ill because of a virus or infection is such a surreal experience. One day, you were fine, and then after developing a simple cough, cold, or stomach flu, your life was changed forever.
“at some point we should probably have a conversation about how the normalization and glorification of physical exhaustion during medical training contributes to producing deeply ableist doctors.
Like a) it makes the field completely inaccessible to many disabled people whose knowledge is deeply needed there and b) it supports a deeply f*cked up worldview in which pain and fatigue are things you can and should "just push through”
