Saturday, 20 August 2016
One of the hardest symptoms I have and the most difficult for me to manage is pain.......specifically neuropathic pain. I have had neuropathic pain since I first started to get my MS symptoms back in 2002.....14 years ago, wow that's scary!
Like all MS symptoms, not everyone has every symptom. I know a lot of people who don't experience any pain as a result of their MS......It all depends which areas the lesions are on your brain and spine.
Before I had my first MS symptoms and consequently got my diagnosis, I never really went to the doctor about anything. I'm not embarrassed to say that I was always a bit scared of doctors, especially GP's! I don't really know why but I know I didn't like going to see them if I could possibly help it and it's probably why, when my symptoms first started, I left it a few days before even going to my GP, I was sure that, if I ignored it it would just go away.....wouldn't it? Ummm no! ;-)
I am certainly not afraid of GP's, consultants, nurses, none of the medical profession now, in fact, I have been and continue to be looked after amazingly well! When you are dealing with a chronic illness or illnesses, you become the best expert of whatever condition or conditions you are dealing with. Martin and I have a wonderful relationship with our GP and my consultants across all my illnesses and my GP has said to me more than once that I probably know more about MS than she does now!
We have actually stayed with them all even though we've moved a little further away. They are all such an integral part of my support system and I couldn't bare leaving any of them at the moment! They have all been with me across all my diagnosis' and they all know me.....really well!
We are able to stay with our surgery, even though we now live out of the area, because they do allow it but each surgery is different. You must ask them first if it is ok....our surgery allows out of the area patients but you can't ask for a home visit. I haven't actually ever needed a home visit.....so far.....but if I did have any type of emergency I would just go to the nearest A&E!
Now, on to the Lidocaine infusion!
I have a great pain consultant who last year suggested to me to try something called a Lidocaine infusion. Now, my understanding of it is that it is what is used for giving anaesthetic and because of that it helps to deaden the pain......it doesn't get rid of it completely but I get about four to six weeks where the pain is taken down a couple of notches and I'll take that! He told me that he'd been getting good results with it and he thought it was worth a try.
Pain is a very difficult symptom to deal with, I remember when my symptoms first started and I had no idea what was going on, I used to think it was all in my head! It is a symptom that drives me crazy and over the years I have thought, a lot, about how best to describe it to help people understand what it is that I'm feeling. It is one of those symptoms that no one can see and so it all goes on what I am saying and I hate that......what I feel may be very different to how someone else feels it.....what if I'm making more of it than I should be?
Of course that is ridiculous though because whatever I am feeling, if it is affecting me then it matters. It's taken me many years to be able to think like this though and many hours of discussions with a Neuropsychologist.......he would be very proud of me now though!! 😜
Just to give you some idea of what my painful sensations are like, here are some examples of what they feel like to me.
I get a sensation in my toes that feels like when you've been out in the freezing cold and you go back inside and your toes start to warm up but as they do they get a burning sensation through them. Unfortunately I can get this sensation without even going outside! 🙁
I get a sensation in my lower back which feels like someone is stabbing me with lots of tiny pins or like someone has taken a small razor blade and is making lots of tiny cuts in my skin.........I also get this sensation in my feet and hands.
I also, very often, get a horrible sensation in my fingertips and they feel painfully numb. This always confuses me, how can something be painful if it is numb, surely if it's numb you can't feel it, but with neuropathic pain that's how it works.
So my pain consultant arranged for me to have my first infusion and I had it last year.
I was given a pain diary to keep a record of my symptoms to show how and if they varied over a three month period. I then sent it back to the pain management department and my consultant decides if it's been any benefit and whether it's worth having it again. I was blown away by the fact that according to my results, I had experienced about four to six weeks of a lesser amount of pain. It doesn't get rid of it and I still have bad days but on the whole, the infusion had definitely been worth it so I was booked in to have it again!
The second infusion was booked in for just before Christmas last year......I was actually delighted because it meant I would possibly have a bit of relief over Christmas.....and I did! Unfortunately as I was coming to the end of that infusion I came out in a bright red rash.....I was given a big dose of antihistamine and it went away so I was able to go home but my consultant was concerned that it had been an allergic reaction to the lidocaine. He was then unwilling to let me have any more infusions until I had been tested to see if I was allergic or not. Obviously all this took time but I had a challenge test done, which is where I was injected four times, once with just saline solution, the second was a Lidocaine mixture of 1 in 100, the third was 1 in 10 and the fourth was purely Lidocaine.......happily I am not allergic to Lidocaine!
I was actually fairly sure I wouldn't be because, after speaking to my MS nurse, I had found out that a rash, can be, a side effect of the new disease modifying drug I had started last year - Tecfidera! It is a strange rash, it's almost like a heat rash and it comes up on my left forearm, the upper part of my right arm and all across the top of my shoulders. It is prickly like a heat rash and can come up bright red too......but at least I know I am definitely not allergic to lidocaine!
Unfortunately, because of all that, I had missed my slot of having my third infusion because they wouldn't let me have it until they knew for definite that I wasn't allergic to it.......I totally understood why they had to do it and even though I had a proper explanation for the rash, they would not allow me to have another infusion until they knew for sure. But in the meantime my pain was escalating quite severely.
I had an appointment to go to the hospital, to the Day surgery unit, which is where they do the infusion so I put two and two together but came up with five because when I got there I was told I was having a pre assessment for having my collar button fitted in my ear......this is to help the vertigo I get from having Ménière's Disease! But that wasn't so much the problem, what really upset me was the fact that I was being told it would be September, at the earliest, before I would get this treatment....I was devastated!!
Now, as I have said, I generally do not go to my GP unless I really need some help.....or I'm really desperate.....at this stage.......I was really desperate! The idea of having to wait about four more months before having treatment that I knew was likely to help, I couldn't imagine how I was going to get through that wait so I went to my GP who was brilliant and she phoned the hospital straight away to try and speak to my pain consultant.......to my amazement she got right through to him! She explained that I was in a lot of distress and asked if there was any chance of getting the infusion done quicker but he explained to her that as this is a relatively new treatment he is only allocated two 2 hour slots a week, by the hospital, to administer the treatment, which means only two patients a week get it but because the treatment is becoming fairly successful, the more patients that have it, the longer the list gets for repeat treatments and that is why I am having to wait so long for my slot. He did say that he would try and look into it and see if he could get me in any sooner but in the meantime I just had to wait! My doctor did increase one of my pain meds, PreGabalin. I was on 150mg twice a day but the maximum dose is actually 300mg twice a day so I was able to increase that and I got to the dose that I am now on which is 250mg twice a day. It helped a small amount but ultimately what I needed was the infusion!
That phone call must have helped because a couple of weeks later I got an appointment through......I was going to have the infusion on 8th August. It was still about three weeks away but it was better than September!
It is so frustrating though because I knew there was a treatment that would lessen the pain I was in, so naturally, I just wanted to have that treatment as soon as possible but I was having to wait and it is so hard to explain how unbearable that waiting is. You have to live your life and get through each day because what other alternative is there but the pain just eats away at you. I am one of the lucky ones because I have Martin and he helps me through every day, every hour, every minute and without him I'm not sure that I could cope with it. It sounds like I am being a bit over dramatic.......I'm not, I'm just being honest.
Anyway, the 8th August finally came round and I have had the infusion and finally my pain has started to lessen slightly. It's not a miracle cure and it will only last for four to six weeks but I will take that over nothing at all! When I had my infusion, it was given to me by some nurses though rather than my consultant because they are setting up the nurses as an extra service to enable the treatment to get to the patients slightly quicker........It effectively means that the waiting will be down to eight weeks in between treatments rather than twelve weeks.......that was music to my ears.......I'll take that! 😋
Hugs to all
Monday, 1 August 2016
I started on the DMD-Disease Modyfying Drug, Tysabri in 2010. It was a huge decision because having Tysabri infusions is not without its risks. But at that point in my life I wasn't actually on any of the other of the available DMD's. I had tried both Rebif and then Avonex, (both are known as part of the group of Beta Interferons) over a period of about 2 & 1/2 years but it got to the point, with both of them, that I didn't feel I was getting any benefit from being on them and having to inject myself and the side effects from that were just becoming too much of a problem. So I had a chat with my consultant and he agreed that I could stop them but then I wasn't on any type of DMD at all.
I had started to hear a bit about a new treatment called Tysabri but that it came with some pretty scary risks.......people had died while being on this treatment........this needed serious consideration. I knew people who were starting on it so I asked them how they made their decision to go on it. Of course everyone is different and everyone's reasoning is also very different. If I wanted to consider this Martin and I needed to talk to my consultant and get the real facts about it so that we could make a proper informed decision.
We took a couple of weeks to discuss it before coming to a decision......we went backwards and forwards on it but we decided that I would go on it and just keep a close eye on things! I had my first infusion on 30th June 2010. It is a four weekly infusion and I had to go to the hospital in Plymouth to have the treatment because that was the only hospital, locally, that was set up to administer it. At that point there were less than ten of us having this drug so it was in the early stages of sorting out how to and where it could be administered.
Not only was I nervous about starting the treatment but it was an infusion which meant I needed to be cannulated and because of the way my skin is and the altered sensations I get, it is incredibly painful for me to have any needle put in me! It's strange because I am not afraid of needles as such, I don't get worried about the needle itself, it is the pain that I feel when the needle goes in, it's like a red hot poker being stabbed into my skin and it hurts......a lot!
So I had the first couple of infusions and the infusion itself went ok but the poor nurses that had to put the cannula in always had an absolute nightmare. There was one nurse who was particularly good at finding veins and so whenever there was anyone who presented quite a challenge, if she was on duty then she would be asked to help. I was already friends with this nurse going way back to when I had my first investigations done in 2002 (she held my hand and helped me through my first ever Lumbar Puncture!) and so if she was on duty she would have a go but I was always a challenge and not in a good way! I wasn't happy because my veins were getting harder to deal with and I would spend the four weeks in between each treatment worrying about the next time and would I be cannulated ok? I was seriously beginning to fear that if we couldn't find another solution I would have to give up the treatment.
I went down to the hospital the next time and I was talking to a nurse I hadn't seen before. I was explaining everything to her and her first reaction was "why haven't you got a portacath in?"
"Excuse me.......a what?"
She went on to explain that it is a small port that is put in your chest and attached to a vein in your neck. When you go for an infusion, the nurse feels for the port, the needle goes straight into that port and the infusion is hooked up. We had never heard of it but it sounded ideal! I emailed my consultant and asked him about it, he told me some more information and said he could get it organised if that's what I wanted. We decided that it couldn't be any worse than what we were doing anyway so it was arranged and I had the portacath also known as a Tivad, put in my chest. It was put in just above my right breast and it was attached to the vein in my neck.......it was so clever and meant that my treatment on Tysabri could continue!
I actually stayed on Tysabri for just over four years. I had my final infusion on 28th August 2014. I tolerated it fairly well, I would have the infusion generally on a Thursday and I knew that the weekend was out, I wouldn't plan anything because I would always be incredibly tired and generally feel pretty rough but those three or four days were my only downside.
My biggest problem was that I didn't feel any benefit by being on it. I knew people who knew they were coming to the end of their four weeks because they could feel a deterioration in their MS. They also felt the pick up after they had had the infusion but I never felt either of those things and that started to really bother me.
It's true to say that I didn't have any major relapses (flare ups), I did have minor ones........they didn't feel minor at the time but there would never be anything show up on an MRI etc.......it's one area I always feel is a bit tricky. I know how I feel on a day to day basis so, in turn, I also know when things feel different. But those differences don't necessarily show up on scans which makes it difficult to say what is a relapse and what isn't? I always understood the definition of a relapse was an increase in symptoms or new symptoms that last for or longer than 24 hours. The trouble that I have is that I have several horrible symptoms on a daily basis so I then have to weigh up what is a new symptom or have the symptoms that I live with on a daily basis got any worse?
It's never straight forward with MS. I will never forget in the first few years of having MS I met a doctor who said to me that the only predictable thing about MS is it's unpredictability and I've never heard a truer word spoken!!
So I had my last Tysabri infusion on 28th August 2014. We took the decision for me to stop it because I just didn't feel like it was helping me. I had one weekend in four where I had to stay home because I felt quite rough, I wasn't feeling the benefits or downsides that I knew other people were and I know you can't compare, but you do use the information to assess where you are, so I just wasn't convinced it was the right treatment for me. We had a chat to my consultant about it and it was decided that I would stop for six months and we would reassess things then......unless anything happened before that of course!
It felt a little bit strange not being on any kind of DMD because I have been on something for so long but it was ok!
I was fine for the first seven months but in March last year (03/2015) I lost a lot of the power in my left leg, my whole left side was very weak and my left hand wasn't working properly either. It didn't happen overnight, it came on over a couple of weeks which messed with my head a little bit. When something happens dramatically you know that there's been a change but when it slowly deteriorates over days and weeks that's when I start thinking "is it all in my head?!" My altered sensations were worse too, I had horrible stabbing pains in my lower back, which I get very regularly anyway but these were somehow worse! There was definitely a big problem with my left leg, it wouldn't move on it's own at all, I had to pick it up and move it. I couldn't walk without feeling really unsafe so I had to use my wheelchair whenever we went out and our house became a very unsafe place for me to live in. Our bedroom and bathroom were both upstairs but I didn't want to just stay up there, I wanted to be downstairs, so Martin barely left my side because when he did, I'd fall over.......with monotonous regularity! 🙁
It turned out that I was having a relapse as there were new lesions that had shown up on my MRI scan.
I was given a course of steroids, oral ones, which are awful to take! They taste awful and leave a really horrid after taste........but then we are given a massive dose of steroids whether it's given by IV or orally. And, for me, historically, they have never really worked but in the lack of anything else, steroids was the only thing left for me to take and I haven't had them for years so we thought it was worth a try! I think they might have helped a bit this time but it's difficult to say because I also started a new treatment around that time too.
My consultant wasn't happy that I wasn't on any type of DMD, he thought that being on something, even if it wasn't as powerful as Tysabri, was worth trying to keep any MS deterioration at bay. So I was introduced to a new drug called Tecfidera, also known as BG-12. Not been around long and to give us some idea of how strong it is we were told that it's stronger than the original Beta Interferons like Rebif and Avonex but it's not as strong as Tysabri! We decided that it was worth a try and to my absolute delight, it was explained that it's a capsule taken twice a day and it's delivered directly to me, so I don't even have to leave the house, at all, to have my treatment.........this I could cope with! 😉
It's also worth remembering that all this was happening at the same time that we were offered the wheelchair accessible flat that we accepted and moved in to! It was amazing, I couldn't use a wheelchair in the house we lived in, there just wasn't the room........hence the reason I kept having several nasty falls. So to move in to a flat that's been build so that someone in a wheelchair can live comfortably, with everything totally accessible for them, was a dream come true........and having lived here for just over twelve months, it was the best decision we ever made.........being able to go to the bathroom, on my own, makes a huge difference to me and it's given me back a small amount of independence again.
It's the little things that makes the biggest differences, it really is!
Stay hydrated in this heat over the summer.......I'm looking forward to the cool of winter already lol!!