I hope everyone's Easter was amazing and everyone enjoyed some much deserved rest and reflective time to one's self. Today should have been my first day back at work after the holidays off, but instead I spent it in a long consultation about my afore-mentioned referral for the drug Lemtrada. To recap: this is an infusion based drug, taken for five days then repeated again a year later for three days. I'd say I've been feeling pretty daunted by the prospect of it and going into that appointment today and talking it over cleared some stuff up for me so, I'm kinda going to go over that right now and just vocalise where my head's at right now to help process it all.
The appointment started off with a mini flip-chart explanation of what MS is and how normal neurotransmitters work and signals to the brain are disrupted due to the attacking of myelin sheaths in people who suffer with this condition. Looking at the charts and all the scientific jargon made me feel a bit sick all over again, like when I first got diagnosed and maybe that's because it took me back there. The nurse was perfectly lovely but I suppose all the language and the science reminded me of those times and I just got all clammy and dizzy and I hated hearing it all again. I felt sad, like this was reaffirming the existence of this foreign disease in my body, in case I had forgotten about it. It has never ceased to exist but there are blissful moments of forgetfulness when I put aside that anything is wrong at all. I think people that know me do the same and it's not a hard thing to do when this thing isn't exhibiting itself and is hiding behind my skull like a predator in the depths of the darkest forest, waiting for the perfect opportunity to pounce. It's invisible and has a habit of showing itself when you least want it to.
From there, the nurse went on to explain how Lemtrada worked and my misconception had been that it knocks out your entire immune system; that's not the case, it knocks out certain cells (T and B cells) and forces your body to reboot them. This should hopefully mean that your immune system, will no longer attack healthy protective tissue around your neurotransmitters, halting the MS and reducing further progression. This was an off-label MS treatment, actually a form of chemotherapy for Leukaemia, but they found it was working for MS sufferers and have been using it in America, Europe, London in the last 10 years and it has finally made it down to the south of England in the last year. I was fraught with fears about having no immunity at all and potentially catching a cold that would do some serious harm, but after asking about the likelihood of developing a serious infection from a compromised immune system, the nurse told me there hadn't been a case of that yet. I would say that's pretty reassuring.
Side effects include a rash (which looks worse than it feels in some cases apparently and there have even been a few reports of it not even itching, but I won't hold my breath), tiredness (partially down to your immune system taking a battering, partly down to the amount of steroids give to you just before your daily dose of Lemtrada) and flu-like symptoms. These are the most common side effects so I look forward to meeting them. Another possible side effect are thyroid issues, which are fairly common and easily treated, but still something worth considering. Thyroid problems run in my family and I'm trying to sort out a parathyroid issue currently, so the nurse concluded through her wince that I'm likely to develop something, but that is what monthly bloods are for, so these things can be detected ASAP and treated quickly. Other more rare side effects are ITP (a blood disorder related to platelets and their ability to clot) as well as kidney disease, but the reported incident rate for these is really low. I figure, there's no need to worry about a lot of this until/if it happens. I'll cross that bridge when I come to it.
I had several bottles of blood taken off me to check for my full blood count, bone profile and other things like the presence of the chicken pox virus and other virus' that may be laying dormant. It would seem that the pre-assessment process is quite thorough to ensure you stand the best chance of success with the treatment and that can only be a good thing. It may not sound it but the appointment was really positive and it lit secret hope that this may be the thing to change my health. I want to keep myself safe and not place all my eggs in one basket so as to avoid disappointment, but this really has the potential to change my life.
It was a deeply emotional experience talking through the ins and outs of the disease, I don't like going back there and I hate feeling the edges of one of my dark spaces, but we all have dark spaces, don't we? Old wounds and all that, but the mindset I want to take with this is about not waiting for tomorrow and not spending time building up and creating scenarios in my head and anticipating what could be and blah blah blah - IT HASN'T HAPPENED YET, HELLO. These things that fill me with dread may never happen but our minds are the dirtiest of gossips and love to create a stir. Trying very hard not to allow myself to be stirred and intend to embark on this journey one step at a time. I'm going to take it as a personal success that I held myself together, got through the appointment and see this as a turning point to something that'll help me to build the best future I possibly can. Time to get praying I think, I do enjoy a good miracle and only God knows what's waiting for me. Till next time :)
The appointment started off with a mini flip-chart explanation of what MS is and how normal neurotransmitters work and signals to the brain are disrupted due to the attacking of myelin sheaths in people who suffer with this condition. Looking at the charts and all the scientific jargon made me feel a bit sick all over again, like when I first got diagnosed and maybe that's because it took me back there. The nurse was perfectly lovely but I suppose all the language and the science reminded me of those times and I just got all clammy and dizzy and I hated hearing it all again. I felt sad, like this was reaffirming the existence of this foreign disease in my body, in case I had forgotten about it. It has never ceased to exist but there are blissful moments of forgetfulness when I put aside that anything is wrong at all. I think people that know me do the same and it's not a hard thing to do when this thing isn't exhibiting itself and is hiding behind my skull like a predator in the depths of the darkest forest, waiting for the perfect opportunity to pounce. It's invisible and has a habit of showing itself when you least want it to.
From there, the nurse went on to explain how Lemtrada worked and my misconception had been that it knocks out your entire immune system; that's not the case, it knocks out certain cells (T and B cells) and forces your body to reboot them. This should hopefully mean that your immune system, will no longer attack healthy protective tissue around your neurotransmitters, halting the MS and reducing further progression. This was an off-label MS treatment, actually a form of chemotherapy for Leukaemia, but they found it was working for MS sufferers and have been using it in America, Europe, London in the last 10 years and it has finally made it down to the south of England in the last year. I was fraught with fears about having no immunity at all and potentially catching a cold that would do some serious harm, but after asking about the likelihood of developing a serious infection from a compromised immune system, the nurse told me there hadn't been a case of that yet. I would say that's pretty reassuring.
Side effects include a rash (which looks worse than it feels in some cases apparently and there have even been a few reports of it not even itching, but I won't hold my breath), tiredness (partially down to your immune system taking a battering, partly down to the amount of steroids give to you just before your daily dose of Lemtrada) and flu-like symptoms. These are the most common side effects so I look forward to meeting them. Another possible side effect are thyroid issues, which are fairly common and easily treated, but still something worth considering. Thyroid problems run in my family and I'm trying to sort out a parathyroid issue currently, so the nurse concluded through her wince that I'm likely to develop something, but that is what monthly bloods are for, so these things can be detected ASAP and treated quickly. Other more rare side effects are ITP (a blood disorder related to platelets and their ability to clot) as well as kidney disease, but the reported incident rate for these is really low. I figure, there's no need to worry about a lot of this until/if it happens. I'll cross that bridge when I come to it.
I had several bottles of blood taken off me to check for my full blood count, bone profile and other things like the presence of the chicken pox virus and other virus' that may be laying dormant. It would seem that the pre-assessment process is quite thorough to ensure you stand the best chance of success with the treatment and that can only be a good thing. It may not sound it but the appointment was really positive and it lit secret hope that this may be the thing to change my health. I want to keep myself safe and not place all my eggs in one basket so as to avoid disappointment, but this really has the potential to change my life.
It was a deeply emotional experience talking through the ins and outs of the disease, I don't like going back there and I hate feeling the edges of one of my dark spaces, but we all have dark spaces, don't we? Old wounds and all that, but the mindset I want to take with this is about not waiting for tomorrow and not spending time building up and creating scenarios in my head and anticipating what could be and blah blah blah - IT HASN'T HAPPENED YET, HELLO. These things that fill me with dread may never happen but our minds are the dirtiest of gossips and love to create a stir. Trying very hard not to allow myself to be stirred and intend to embark on this journey one step at a time. I'm going to take it as a personal success that I held myself together, got through the appointment and see this as a turning point to something that'll help me to build the best future I possibly can. Time to get praying I think, I do enjoy a good miracle and only God knows what's waiting for me. Till next time :)
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