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

Tuesday, 21 December 2021

Christmas, PIP, New Car & Vaccine No4

 3 weeks have boomed by again, sorry about that.

So what's new in the Doust house ? Well I logged into my banking app on Saturday to pay the lovely man who valets our cars and there was far more money than I'd been expecting to be there - I had a slight panic thinking work had paid me early and I'd accidentally spent WAY too much on Christmas and knackered myself until the end of January. A quick check on transactions in and there was a payment from DWP PIP - I GOT APPROVED and for the higher rate too 😀

It means I can get a mobility car with a hoist to get RoboBob in and out myself without having to always have Gareth with me or ask lovely people to help me. I am beyond thrilled - it will make such a difference I will be fully independent again 😀 such a huge weight off my mind.

My Physical trainer appointments are cancelled for the rest of the month, the poor man has covid so I'm doing daily tests to check I've not got it - today is day 5 and I'm all clear thank goodness. 3 vaccines and the thought of catching it still scares the crap out of me.

On the subject of vaccines, I've had a letter through saying because of my Ocrevus treatment I should have a 4th vaccine - it has to be 3 months after my 3rd one so that will be due January 11th but I'm booked in at the end of January to have it at my doctors clinic. I was hoping for a Moderna one this time - call me daft but it would give me a 'full house' at vaccine bingo and that amuses me. Sadly I'm not going to get my full house because Dr B has told me it's 99.9% likely to be another Pfizer *shrugs and doesn't mind at all*

I also got a letter yesterday saying that I'm being sent a PCR test kit for home use at some point soon - again a 'vulnerable' person thing (If you're not in England that probably sounds like I'm talking code - a PCR is the name for the one that you have to have done for permission to travel or to confirm infection after testing positive on the usual home Lateral Flow Test that we have here in the UK)

Work has become very quiet this week, a lot of people off in the run up to Christmas but it's really given me a chance to catch up on paperwork and get my inbox cleared down so I can hopefully start the new year without wincing and wondering how I'm going to even begin to clear down 100's of mails.

I had another MRI on Sunday at Hammersmith hospital.The appointment was at 12:45 and I had arrived by 11:15. A nice lady buying a parking ticket helped me unload Bob from the car and I got up there well over an hour early but I'd rather wait around than be late. Happily they called me straight through, the did my back (which the previous MRI didn't cover) I was done and out the door before it even got to my appointment time and there was a nice man in hi-vis setting up a lifting platform outside the hospital so I told him he looked big and strong and could he help me put bob back in the car - result.

I got home nice and early which gave me a chance to pop back to Ford and order my mobility vehicle - it won't arrive until the end of April but they'll sort out extending the agreement for my current car - the Tourneo through until it gets here - happy days 😎 

All the christmas shopping is done - if you've been reading this a while you'll know this is VERY unusual - I'm usually flapping around in the last week before Christmas because I've forgotten stuff. The meat order to go up to Halifax is due for collection between 12 & 1pm on the 23rd. The dogs are booked into the private hire dog field in Halifax on the 24th, 25th and 26th for a run (it's on the top of a bloody big hill so it's probably going to be extremely cold and windy but they'll have a good run and get some energy out of their systems)

We both off from Thursday and are not back into work until January 4th - so after tomorrow I'm taking the rest of the year off - I really do like saying that - shame it's not the summertime really 😂😂

The Ensuite is finished (well the painting isn't done yet but thats's scheduled now for the end of February and pretty much the whole house is being done all in one go) the non-slip shower tray is an absolute game changer I feel safer when I'm in there for the first time in a very long time.

All things considered life is really good right now (I'm assuming that by Friday I'll still be testing negative for C-19 and Christmas can actually happen - the optimist in me is saying it will all be fine) 

I hope that you have a chance to enjoy friends and family or just have a rest (both would be better)  over Christmas time, whether you celebrate it or not. 

Take care, stay safe and love and best wishes from us

Tracy

xx

Wednesday, 1 December 2021

Latest Ocrevus, the bathroom is being fitted and Blog passes 1/4 million views WOW

I had my 3rd round of Ocrevus last Thursday, they did the fast infusion and everything was very uneventful really. I had a nice long snooze thanks to the antihistamine, played some candy crush games, a bit words with friends and watched Skyfall again on my iPad.

It's funny how I always forget that the body really doesn't like having extra stuff pumped into it when it's not already 'leaking' somewhere. I always get that horrible spike in the head headache afterwards for a few days - this time 5 days. I guess it's a little like when someone has a child and says afterwards they'll never do it again but they do - they forget the unpleasant and do it again because it's worth it.

It's horrible but it is what it is, I guess I'm writing this in the hope I'll remember in May next year when I have my next round to have paracetamol in the house so I'm not hiding in the dark, feeling sick and flinching every time there's a noise for 5 days 😆😆

The team arrived on Monday to refit the ensuite bathroom Monday so I spent the day in the lounge with the dogs while Demo day went on above my (already sore) head. The non slip ceramic shower tray went in yesterday and the floor was tiled and today the tiles on the walls are going up. It already looks so good and it's going to be so beautiful when it's done. 

I can't wait to just walk into the shower and just do what I need to rather than struggling to get into the bath in the other bathroom, slipping and sliding all over the place and being terrified for my safety. I've called first dibs on using it 😎

In other news I saw a personal trainer on Monday (self funded) I was pretty terrified if I'm honest, before all the MS and spine problems I liked exercise, I was strong and I knew how to do things without making things worse but my confidence really has taken an absolute battering in recent years so I was scared about what he'd want me to do and what the price for it would be. He had me doing chair based exercises rather than standing and moving around. Lots of stretches and resistance band movements and holds. The hour flew by and he was  so patient and kind. I'm actually looking forward to the next session with him tomorrow rather than dreading it. 

My PIP interview has been done and is now back with the team for review. It will be another 8 weeks or so before I hear anything but I hope that they look favourably on it. A mobility vehicle with a hoist so I can leave the house to do things on my own - things like being able to go to work or attend hospital appointments without always having to have Gareth with me to unload and load RoboBob would be life changing.

Lastly I want to thank you for reading this. 

I know it's more Adrian Moles diary for a middle aged woman with MS than it is an MS / Lemtrada / Ocrevus 'document'. I guess I never really wanted it to be anything other than what it is. A continuing record of how life is with MS, how treatments are and how they effect (my) everyday life. I wanted it to be a true life real time record - an ongoing record (sadly so many of the blogs that inspired me at the start of my MS journey have withered away) that isn't just for the good times or the bad times but for all the times.

When I started writing this I just wanted to be able to help a few people learn about this MS life, Lemtrada was a newly approved treatment and Ocrevus was just being concieved. It was important that information and experiences were shared to help others to make an informed choice by reading about other peoples experiences. The origins of these treatments were for horrible cancers and other nasty conditions - people called them Chemo (I did at the start) and that made people afraid. 

Social media platforms are great for bringing people together who have conditions like MS, treatments like Lemtrada and Ocrevus, or even just cooking enthusiasts - information sharing is so easy and readily available at the touch of a button or a screen. One of the very human things about social media resources is that they often have far more negative content that positive about a condition or a treatment for it. It's simply reality that people are more motivated to share when times are hard, when they are scared or in a dark place. 

It's harder to just keep saying 'it's okay' 'I'm good' 'nothing happening here' ...... there's a level of guilt associated with it, you don't want to seem like you're bragging or somehow diminishing the struggles of others when that's not what you want to do at all. 

Both sides are important to share and important to read when considering what is right for you and that is not going to be the same for everyone but it's about having as much information available to help make that choice.

It's not all roses, if you've read this all the way through or been following it for a long time (you deserve a medal or something for that) life has changed, it's different now, its harder than I ever imagined it would be in some ways but it's also really great in other ways. I'm naturally a positive person, the glass isn't half full or half empty, the important thing is the glass is refillable with a wide variety of drinks and that I can choose what I want in it.

Dagnammit I'm on a soap box again aren't I - I'll stop 😃

It's taken nearly 7 years but last week we hit the magic 1/4 million views mark and I hope that it's helped even a tiny fraction of that number of people - even if it's just helped you sleep because it's quite dull and poorly written.





Be strong and stay positive 
much love
T


Friday, 19 November 2021

Upcoming Ocrevus, RoboBob, Yet another MRI, PIP interview and stuff

 Next Thursday for the next round of the good stuff, I'm all prepared, I've got some anti UTI meds on the go this week (the urologist suggested this) so that I don't provide a funky pee test when I get there. I'll have enough Mini Cheddars to feed a football team and plenty to watch on my iPad for the day (assuming I don't sleep through it all thanks to the antihistamine 😂)

RoboBob arrived and is doing just what he needs to. It's nice to be able to get out and about again rather than restrict myself to small outings with minimal walking - And I will admit I do get a kick out of watching him fold and unfold himself.

I'm booked for another MRI on December 19th. I had the pre-ocrevus call with the nurse to check I was ready and I asked about the MRI results (I'd already seen the one liner on my online records and spotted that there was something odd) The nurse told me my brain, neck and spine all showed no change and I queried how they knew my spine was fine since they didn't actually do that. So back for a full back and I still want the neurologist to actually talk me through it not a nurse reading comments back with no context.

I have a PIP interview on Monday morning (fun start to the week) I've applied at last because with the back problems on top of the MS I now can't load the power chair into the car myself. I need something with a hoist mechanism so I can get around alone and use the wheelchair without being dependent on having Gareth or another reasonably strong fit person with me and that requires a motability vehicle, I'll probably ask for hand controls as well since I don't entirely trust myself with the pedals these days (my ankles sort of roll a little rather than my foot staying square to the pedals if that makes sense - it bothers me on short drives so long ones are probably going to be worse)

We're off to Yorkshire for Christmas this year and for once not doing the Wales part as Aunty Kathy is going away to a swanky hotel with her friend to have a nice chilled one which I'm sure she will enjoy. Just need to sort out our timings / shopping / gifts and a dozen other things - but I have sorted out the dog park for the pups so I'm not a complete failure 😊

Winter is coming here in (not so) sunny Berkshire. The heating is on, the winter menus are being prepared - the comforting winter stews, casseroles and loaded Mac N Cheese. 

Life is good. Hope you're doing well, talk again soon

T

xxx

Friday, 29 October 2021

I take it all back Oak Furniture Land

 So the end of the week rather than the start but WOW just WOW

They've restored my faith in humanity

Our delivery was scheduled between 10am and 1pm. 

  • They called at 08:45 saying they'd be a bit early and arrived at 09:15
  • They were in an appropriately sized Luton Van
  • They unpacked it all and brought it in
  • They set it all up 
  • They took all the packaging away with them
I should add I'd paid for the premium delivery with unpacking and setting up but honestly it was worth every penny.


Winston however doesn't seem to understand the message on the cushion in my seat 😂😂😂


And before it sets anyone else OCD off (mine went nuts when I saw the first picture) the painting has now been straightened up 😂😂😂

Wednesday, 27 October 2021

Comedy, fun, plans going wrong and the death of Bob

 I should start with the death of Bob .... 

Bob was the name I gave my electric wheelchair. On Saturday / Sunday Bob suffered a fatal chassis injury and is to pinch the word from the film Tango and Cash .... FUBAR 😞 The part of the chassis attached to the back right wheel sheared clean in half and there's just no fixing it. 

I am now £1,699 poorer having purchased Bob Mark II - I'm really hoping that he makes it here by the end of the week because going without over the weekend will seriously restrict the amount of fun I can have.

The sofa is being collected tomorrow by a nice man who's going to give it a new home and the 2 new reclining sofas are arriving on Friday (fingers crossed - it's coming from Oak Furniture Land and they've not had great success in the past in making things arrive down our lane in an appropriately sized vehicle and it was due 3 days ago so Friday is already a delay)

The En-suite fitting so we finally have a usable shower was supposed to start this coming Monday but the anti slip shower tray hasn't turned up so that's now put back to the end of November - another month of trying not to fall and smash my brains out trying to get in and out of the bath in the main bathroom for me ....... 😢

I've got the follow up appointment with the spine guy next week after the procedure I had. I suspect that this is going to necessitate another type of treatment - Facet Joint injections ... they don't sound fun at all.

Christmas is coming, everyone is getting an orange and a mince pie each this year since I've spent all my savings on Bob II - so that plan has all gone a bit anti gravity breasts.

We've been out to a couple of comedy gig in the last 2 weeks - at proper venues not online ones. Jonathan Pie for the first one and Scott Bennett for the 2nd (although the disabled ramp at the Scott Bennett gig is the thing that killed Bob so perhaps ultimately not going to be quite so fondly remembered) 

I have an appointment on the 8th to get my MRI results from the weekend before last - then we will see if I've had some activity and discuss what it means in terms of continuing with Ocrevus, maybe back to Lemtrada, or maybe even the big one if something is happening.

In the interim, life is good roll on Christmas and a well deserved rest.

Hope you're enjoying life

xx

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 someth...