Monday, 24 January 2022

Blood results back, vaccine No4, spine stuff and the great escape

 First things first, the bloods came back on my Patients online record. After vaccine number 3 there were (unsurprisingly) no covid antibodies there but surprisingly there were also almost no B cells so that nixes the 'Ocrevus just isn't working' theory too. I've emailed my neurologist to let him know it's all done and the results are there. Just need to wait for the face to face appointment to come through now I guess. Rituximab, Cladibrabine and a higher dosage of ocrevus have all been mentioned, but with the blood results it is probably all a bit moot now 😄

I had vaccine number 4 the Saturday before last with the usual sore arm as a response to it but apart from that it was very uneventful.

We stupidly also had a night off dry January and overdid it a bit, stayed up too late and I sat out in the garden in the cold reading a book and I pretty much seized up - everything hurt the next day - and the day after 😂😂 - it official I really am getting old.

I've spoken to IPASS today the pain management people, The spine specialist I've been referred to ....... wait for it ....... the same guy I was seeing privately ..... 

Apparently he's willing to request funding to do the facet joint injection on the NHS .... I guess we will have to wait and see how that all pans out 😀 There's radiating pain, localised pain and now just for fun my right hip is not in a fun place either.

The weekend was a wash out, my first migraine of the year and it was a horrible one. It hit early Saturday afternoon, some sumatriptan pulled it back to bearable late Saturday night but the sick shake feeling stayed with me until late Sunday. Thank goodness 5/6 a year is all I get, I know a few who get a couple a week and that must be awful.

By last Tuesday when the lovely Micka arrived for my Physical Training session I felt human again. The difference is starting to show now. The increase to my upper body strength means I can get down to the floor with something resembling 'dignity' now (it's not pretty but I'm not just falling) and as long as I can brace my arms I can get myself up with a little dignity too despite the whole right leg / hip / back doesn't work or have any strength at all thing. It's all about angles and leverage and the right thing to hold on to and bloody minded determination but I can see some results and am very hopeful that I won't have to sleep on the kitchen or bedroom floor again any time soon. 

According to last weeks announcements come the end of the month the UK is 'going back to normal' so we are back to our offices masks are a voluntary thing (except on public transport) I have to admit the thought of this fills me with trepidation, 

It's not just the being around people thing, it's having to manage Robobob without a hoist. Dealing with rush hour traffic again, I guess I just don't want to have to do that 4-5 days a week any more, 1 or 2 at the most I think, if the last 2 years have taught us anything it's that we can do what I do without the need to always be crammed into the office. 

That said there's talk of a few of us meeting up there tomorrow and I have to say I'm quite excited to see real live humans again. It feels almost decadent to be planning a day out to the office - in my head I can hear the theme tune for The Great Escape playing 😎

Look out world here I come



Thursday, 13 January 2022

Failing Ocrevus and an atrophied lesion in my spine

Yesterday I had my appointment with my neurologist to get my end of year report and the MRI results. 

I had an idea that he would say something had happened, I'd asked for the MRI because I'd been having some muscle tightening in my legs and the twitching was more pronounced. I was expecting to be told relapse but to be told an old spine lesion has atrophied was unexpected. 

He also mentioned that my CD20 B cell count before the November Ocrevus treatment was extremely high. It had been before I started O last year but it should be very low once you're on O and mine isn't. 

Ive popped into London today to Hammersmith for some blood tests - one to check the CD20 B cells and a bonus one to check for Covid antibodies 😄 (I have my 4th jab on Saturday so now is a good time to check the levels from the 3rd one) - its going to be interesting to see what that actually says .... if O isn't killing off the B cells you'd thing they slurped up the vaccine and made antibodies ..... or alternatively did the O kill any that were born???

The T cell test will happen after the 4th so again that might have some interesting results.

We talked about Rituxan and Cladribine (mavenclad) as alternatives as well as another round of O but at higher dose than the previous 3 with more checks in place to see what it's actually doing in when my 4th round is due in May. I also asked about the possibility of a 3rd round of Lemtrada but was told that Lem is less effective with each round and that a 3rd wouldn't be very effective at all..... that makes me sad 😥

All somewhat un-nerving but whatever the conclusion I'm going to carry on kicking the MonSter in the balls at every available opportunity.

Dry January is in full effect along with healthy eating and my annual lose some weight effort. It's actually going really well - mostly because Gareth is doing it too - properly this time because he wants to not because I've bullied him into joining / helping me.

That really is all I have for you this time I'm afraid, everything else is just very BLAH to be honest, working from home going nowhere, seeing nobody and just chilling. 

Actually one more thing, my PT sessions ...... I'm getting stronger, I got off the floor twice on Monday using my desk to help me up, but I did it myself in 1 attempt both times 😎

Is it wrong to celebrate that I'm now less scared of falling because I might be able to get up with the help of inanimate objects??

stay well 

much love

T

Wednesday, 5 January 2022

The Girl who dodged Covid, Happy New Year & a T-Cell Trial - and a new theme for the blog

First things first - you're not in the wrong place, but the blog site has had a bit of a facelift to make it easier to read .... sorry if I've confused everyone. I went to have a read of something and realised the old background did it no favours and made it difficult to see some of the text parts. 

Well that's my excuse .... the fact that I now have different glasses for seeing, reading, working and combinations of all these due to my advancing years might also be a factor 😂😂😂

I really got used to the routine of getting out of bed when I wanted to not because I had to. Funnily that didn't mean sleeping in until lunchtime - it was more like an extra 40 minutes here and there than a 2 week long sleep marathon but I could definitely get used to that - time to up my lottery game I think 😎

This year all the planning and preparation paid off, we were where we needed to be when we needed to be there and we didn't forget half of our stuff (or if we did then we haven't missed it yet 😂😂) 

The Christmas stuffing (not a euphemism) was lovingly prepared by myself and Gareths Dad and it was absolutely epic. The Turkey was great despite a slight glitching in the timing calculation process. There was snow on Christmas Day (well what we call snow in England ..... 3 inches and it was gone by mid day on Boxing Day) 

As you have probably guessed because Christmas 'actually' happened I didn't catch covid from my PT (thank goodness) he and his whole family had it over Christmas which must have really sucked with a little one. I did Lateral Flow tests every day and deliberately stayed distanced even though we were together. At least we could be together this year rather than trying to have Christmas dinner together on a Facebook messenger video chat which really didn't work at all last time.

I should add Gareth upon reading the title of this post said 'Well you've done it now haven't you ......' apparently I've doomed myself to actually catching the bloody thing 

So Omicron is sweeping through the country - quite literally. So many people I know all over the country have contracted it in the run up to the Christmas and New Year period or over the same time period. 218,705 new cases yesterday. The stats say 13.6 million Britains have had it and 149 THOUSAND people have died within 28 days of a positive diagnosis - that's completely mental. The UK population is only 68,422,788 people - that nearly 20% of the population have had / have it and that's just those testing because they have symptoms all these people wandering round asymptomatic that we keep hearing about might not be in that number 

I get my 4th vaccine on the 15th of this month. I got a letter before Christmas from Imperial College saying I needed to get a booster done 3 months after number 3. I've just popped up to the doctors surgery to collect the letter  that confirms this and apparently I'm the first they've ever had for a 4th shot - MS and Ocrevus Super Power 😎

I'm also taking part in a T-Cell Home Testing trial to help with information gathering in relation to people on Ocrevus and how our T-Cells learn from vaccines particularly when our antibody response to a vaccine is likely to be less effective. The program manager in me is always wondering about what data is useful and can help with investigations so I've told them about number 4 and asked would a 'before and after' help them with their information gathering - it just means doing the test twice, once before and once a few weeks after - sore fingers for a couple of days is hardly the end of the world 😂

I have my Neurologist appointment next week on the 12th (telephone not in person) so I should get a full review of both MRI's that were done at the back end of last year. I'm also going to ask them to investigate what happened to my historical information from Hampshire Health Authority and Southampton hospital someone told me once again they have none of my MRI's from that time. It does make me  wonder how they continued to say NEDA since Lemtrada when allegedly they have nothing to compare to before I moved to them. I'm sure that's going to be an uncomfortable part of the conversation - after all I've been with them since 2017.

All systems good here, Gareth and I are on our New Year best behaviour, dry January is in effect, healthy eating is being done and I'm back on 16:8 fasting to give it all a boost. 

Happy New Year to you, heath, happiness and love

Stay well

T

xx

8 years and a week ago today

 It was Friday night Gareth and I were walking round Tesco's in Chineham doing the weekly shop when all of a sudden the world started go...