It's been a while - continued!

It's Been A While - continued!

 

Hi everyone!

I hope you are all well? 

So continuing my update here are some more of the things that I've been dealing with! 

My left arm and hand are noticeably weaker, I sometimes have difficulty cutting up some of my food. I have a very weird sensation in my left thumb which feels as though it's numb but a strange painful numbness. It's hard to describe, it's not an acute pain but a really odd altered sensation that I find quite bizarre.....but that's my body for you! 😂

I started having trouble with my bowels quite soon after I was diagnosed with MS & for many years now but that was helped greatly by the Bladder & Bowel team. I felt I was lucky that my bladder seemed ok, well unfortunately that has changed now. 😞

I spoke to the GP back in May & a referral was sent so when I hadn't heard anything after a few weeks I phoned them, only to be told it was a 6 to 9 month wait for an appointment! What was I supposed to do in the meantime?  

We had to change our GP as our original one, who had been our Doctor for about 15 years and had seen us through my diagnosis of MS & then Meniere's disease and had helped save Martin's life in 2012 by getting him diagnosed with Whipple's disease (not to be confused with Whipple's procedure!) retired.

Fortunately, now we have a lovely GP, who prescribed me some water tablets, one for water retention & one for bladder weakness, which have been very useful and I'm thankfully able to manage it a little better! In the meantime she also got on to the Bladder & Bowel service and I have had an appointment through for the end of November! 👍 Fingers crossed that they can advise me on the best way of managing the issues I'm having with my bladder.

I have always experienced neuropathic pain, in fact that was one of my first symptoms and I can genuinely say that I haven't had a day without pain since it started back in 2002. 

It's a very bizarre sensation and one that you have to learn to live with or it will drive you crazy. 

I have pain all over my skin but it started along the bottom of my feet, my legs and my lower back. I have always said that the pain along the bottom of my feet is like when you are walking along a beach that has that gritty kind of sand.

My lower back is a sensation as though someone is stabbing you with a handful of pins. It is a type of burning sensation. 

I also now have a buzzing sensation, all over my body, as though someone has plugged me into the electricity. 

As I sit here and concentrate on it, to describe it to you, it makes me feel quite sick, so I try not to think about it too much! 

I have realised that I am now needing to use more equipment to help me with everyday things. I found this really frustrating and I would get really annoyed about needing to use things but I am slowly realising that these things are there to help me and I shouldn't look at it as a negative. It is allowing me to continue doing things myself or it is conserving my energy so that I am able to carry on doing things throughout the day. 

My one big example of this is that I am still getting around by using my crutches although over the past few months I have been finding that a lot harder. I have an amazing electric wheelchair at home, that I have been very reluctant to use because in my mind I feel that once I start using it I won't stop! My thought has always been to keep staying on my feet for as long as possible and that the reality is that I'll be in a chair soon enough so I've never wanted to "give in". I'm now realising that by pushing myself to keep using my crutches hasn't been as useful to me as I thought it would be. By staying on my feet I've been pushing through pain, which is exhausting, and I've been using up energy that I haven't got. So I'm now using my electric wheelchair a lot more and have accepted that it is helpful and I'm not giving in at all! 

I am trying to learn that not everything is a negative too. I have always been getting frustrated at what I can't do but, with help, I am learning to turn things around and look at what I can do instead. 

I am needing to ask so much more of Martin, which I have found difficult. Not because I can't ask for his help, far from it, he is the one I always turn to. But I was always taught to be as independent as I can and to stand on my own two feet! So being in a position where I can't stand on my own two feet, sometimes literally, and that I have to ask for help has been quite challenging for me. I've never been one to sit there and let someone else do something that I could do but I'm now having to do that and that is a hard thing to get my head around! My head is my own worst enemy a lot of the time because I can see things that need to be done but I can't actually do them myself and have to ask someone else, which most of the time is Martin, to do things for me. I'm realising that trying to do something that I can't do is putting me at risk of having an accident and causing more problems which really isn't much help at all! 

It really can be easier said than done and it's a hard and frustrating lesson to learn but I'm getting there........slowly! 😃

Sending love and Rosie cuddles!

XxXxX 💕

Ocrevus - Ocrelizumab

OCRELIZUMAB INFUSION 

OCRELIZUMAB or OCREVUS for short is a Disease Modifying Drug (DMD) which basically means that it is used to try and reduce the amount of relapses a person might have.
This therapy is given when a person has 'active' relapsing MS, this means when someone is shown to be having relapses or that there are new lesions on their MRI scans. In my case my yearly MRI scans had shown new lesions on both my brain and my spine in 2022 & 2023 and I had experienced relapses twice over a thirteen month period, which was incredibly frustrating!
Ocrevus is given every six months as an infusion, although the first amount is given as two doses to allow your body to tolerate it. You are also given a Corticosteroid and Antihistamine, which are given as a combined infusion, one before Ocrevus and the other after it. This is done to help combat any side effects you may experience as a result of the Ocrevus infusion. I am monitored very closely throughout the whole process and where I have mine done, a special unit has been set up. They use it for various different treatments and it means there are fully qualified nurses who are experienced with a variety of treatments. I have found this valuable as I am not the easiest patient! Fortunately, as my veins are not easy to find, I had a portacath (sometimes called a TIVAD) put in my chest a few years ago, when I started having Lidocaine infusions to help with my pain. The nurses always had difficulty finding a vein but then, when they did, I would find it excruciating when they put a needle in. It feels as though a red hot poker is being stabbed in my arm because of the neuropathic pain I have all over my skin. This was why the portacath was suggested & subsequently put in my chest as it helps both me and the nurses!

I have tried a lot of the different DMD's, that are available, over the years and there are many more available now than when I was first diagnosed! The list of treatments that I have tried over the years are as follows, some were more successful than others!
I started on Rebif, then went on to Avonex, both of these were subcutaneous injections which I was taught to give myself. After those I went on to Tysabri, which was a 4 weekly infusion. This was when I was given my first portacath which made life a lot easier! I was on Tysabri for quite a while but it didn't feel like it was actually doing anything for me so, after talking to my consultant, I stopped it and the portacath was removed.
I wasn't on anything for a while after Tysabri but when it was suggested that I try another DMD the next one suggested was Tecfidera. This was a good one because it was a daily capsule taken at home and they were sent directly to me, so I didn't have to go anywhere for my treatment!
I stopped Tecfidera in March 2020 and I wasn't on anything until I started Ocrevus in October 2022!
It is an incredibly difficult decision when deciding whether to start or stop a treatment, it comes down to your decision, which is good but I never make that decision without the input of my consultant and Martin. I'm lucky with the support of both these people, my consultant, a professor, is very experienced and with Martin, he is the one who lives with the consequences of any of our decisions. I say 'our' decisions because any of my decisions are made with the full input and support of Martin. I couldn't do any of it without that support.

Back to Ocrevus! I am about to have my next infusion, it will be my third dose. I have to have a blood test a week or so beforehand so that they can check that I haven't got any infections.
I block out the whole day for my treatment as it is three infusions with breaks needed to check for reactions etc. We make sure we have food and drink with us and I always take things to read or my phone to play games but I usually end up just talking to the nurses or other patients!
The day starts off with a urine sample and then as long as everything is good I have the first corticosteroid & antihistamine infusion. This can make me feel a bit flushed but it is better than the possible side effects of the Ocrevus! After a 30 minute break I'll then start the Ocrevus infusion which takes about two and a half hours, depending whether they have to slow it down for any reason. After another 30 minute break I'll then have the next corticosteroid and antihistamine infusion. Once this is done and provided I'm not feeling any side effects, we can go home!
This is given every six months which is a big improvement on an infusion every four weeks or a daily capsule! It's all still pretty new to me and my body so I can't say for sure whether it is successful for me yet. Time will tell and I'm ever hopeful so we're just keeping our fingers crossed for now!

XxXxX 

IT'S BEEN A WHILE!!!

It's Been A While!

 

Hi everyone!

I hope you are all well? 

It's been about 6 or 7 years since I last wrote a post on here, quite a lot has changed and I needed somewhere to process it all.......so I've come back here!

We, Martin, my amazing husband and I, moved to a wheelchair accessible flat in 2015 & I can't believe we have been here over 8 years! We lost our two precious cats, Barnaby & Kit Kat but now we have a complete nutter called Rosie, a Persian cat who entertains us daily! 😻

It turns out that, as of 2023, I have been diagnosed with MS for twenty years, how did that happen? I also turned 50 this year and my wonderful husband, Martin and I celebrated our 25th wedding anniversary and after everything we have been through over those years - 28 from when we got together, it's been quite a year of reflection.

When I think back to my first symptoms of altered sensations over my lower back, down my legs and over the bottom of my feet, to today where I'm struggling to use my crutches, my left leg is very weak, it gets occasional spasms, I can't walk too far and I'm using a wheelchair a lot more of the time, to name but a few, it is quite a difference and not necessarily a positive one 👎

My left arm and hand are noticeably weaker, I sometimes have difficulty cutting up some of my food.
I've had trouble with my bowels for many years now but that was helped greatly by the Bladder & Bowel team. I felt I was lucky that my bladder seemed ok. Well that has changed now and I'm waiting on a referral back to the Bladder & Bowel service. I spoke to the GP back in May & a referral was sent so when I hadn't heard anything after a few weeks I phoned them, only to be told it was a 6 to 9 month wait for an appointment! What was I supposed to do in the meantime?  
Unfortunately we had to change our GP as our original one, who had been our Doctor for about 15 years and had seen us through my diagnosis of MS & then Menieres disease and had helped saved Martin's life by getting him diagnosed with Whipple's disease, retired.
Fortunately, now, we have a lovely GP, who prescribed me some water tablets so I'm able to manage it a little better until the long awaited referral!

I've had a couple of relapses in the past couple of years, one in March 2022 & another in April 2023. I've got a fantastic consultant who got me straight onto steroids, which I hate but they did help! I'd been having yearly MRI scans and after this latest one in April my consultant informed me that my MS has changed. I have new lesions on my brain & spine. It's very disappointing but at least it explains the new symptoms and deterioration. My legs have got worse, I've got issues, as always, with my pain, I'm struggling with my bladder & my mood has taken a dip.

I came off the DMD (Disease Modifying Drug) that I was on, Tecfidera & am now on something completely different called Ocrevus. It is another DMD and is an infusion but this one is given every six months. I am at the hospital for about 6 hours because they give you 3 infusions. There's one before & after the actual Ocrevus which are an antihistamine/steroid mix, this is to help you tolerate the drug & help with the side effects. I have mine done at a special unit in Plymouth and they are fantastic! I started in October last year - 2022 and so far I have tolerated it ok! 🤞

I am still having my Lidocaine infusion which I have been having every eight weeks over the past few years (unless the hospital can't get me in!) I find it really helps me for about six weeks & then generally wears off. It doesn't get rid of the pain but it makes things a lot more manageable! Unfortunately this treatment has become very successful & popular and the hospital isn't set up for the demand. I have been told that they are having to go to a twelve week plan now, which I am not happy about 😠 I definitely notice a difference once I'm over eight weeks & things can become unbearable. I am in discussions though & my GP is helping me to find a solution as the Lidocaine really helps me to manage my pain.

A while ago, when I was in a good place & really positive about being proactive, I decided I wanted to look at all the pain medication I was taking and to see if I could come off any of them. I was looking at how many tablets I take every day & decided things needed to change......if they could! Some of the things I take, like Levothyroxin, I know I can't stop taking but if there are things I could then I at least needed to try! I spoke to my GP as I would never try anything like this without their input. She contacted my pain consultant & a plan was drawn up. We started off with PreGabalin also known as Lyrica & I was taking 300mgs twice a day. I managed to reduce this one by half. I tried to go lower but my body couldn't handle it so I am now on 150mgs twice a day although in the future I might go back & see if I can revisit lowering that one further. I did manage to get down to 75mgs twice a day but then I had a fall & ended up with sciatica in my arm.....who knew that was a thing?! So now I am back up to 150mgs twice a day but one of my reasons for trying to come off these drugs was to see if they were doing anything for me & it turns out some of them were!

The next one I wanted to try was called Tapentadol or Palexia. I was on 300mgs twice a day. Again, I started the withdrawal slowly & with the guidance of my consultant/GP. I am delighted to say that I have completely come off that medication and I can't tell you how much it has changed my life........Genuinely! It really has woken me up, literally, but also to the impact that medication has on us & not always in a positive way. I thought that a lot of my issues were symptoms of my MS but instead, it turns out that some things were actually side effects of the medication. 

I really struggled with fatigue, which is a symptom of MS but what I hadn't realised was the impact the Tapentadol was having.  I generally wouldn't be able to get up before about 9am, on a good day, and I would be in bed by about 5 or 6pm. I came off the medication and now I am up by anywhere between 5 & 6.30am every morning and stay awake until about 9 or 10pm......and this is a daily occurrence! It has blown my mind & I feel like a different person!

As always, throughout all of this, is my amazing husband, Martin. I wouldn't be managing at all if I didn't have him & I don't know how I got so lucky!

Having celebrated 25 years of marriage I realised that we'd only been married for about four years when I got my diagnosis and rather than bolting for the door, Martin has been by my side every day. As I become more disabled he is having to do more and more for me. I wish people could see just how much as carers are really the unsung heroes of our society.

 

Well, that's my update for now but I hope to be writing more regularly again now so it would be great to hear from you all and see how you are all doing!

 

Sending out love & very much needed Rosie cuddles! 😻

Big hugs XxXxX 💕