I’ve been reading some of the posts before putting anything on myself. I was diagnosed a month ago, no need for lumbar puncture or second MRI, just - ‘thought you would be back soon’ from the neurologist. I see the MS Nurse next week after getting her email address from the internet, she hadn’t received any referral yet for me, but I was going a bit mad thinking about it all.
I’ve looked through the MS Decision website but I’m still scared about the whole injection thing. My Mum has had MS for nearly 40 years and is not a believer in the injections which makes it harder. She has progressive and I am hoping I don’t go down that road.
I haven’t had any time off work yet, (The day I was diagnosed I walked out the hospital got in my car and drove back to work) I’m pretty knackered and my legs are sore but I’m scared to take time off to rest in case something big happens and I have to go off again, it kind of feels like I haven’t had anything bad enough yet if that makes sense!
The fact that your neuro is putting you on a disease modifying drug (DMD) means that you don’t have primary progressive MS (PPMS) as the injectable DMDs don’t do anything for PPMS so yours and your mum’s MS are different. This isn’t uncommon actually: there doesn’t seem to be much similarity between the types and severities of MS that a parent and child get.
As far as DMDs go (and no offence to your mum), they’ve only been around for the last 10-15 years so even if your mum had relapsing remitting MS (RRMS), she would probably not have been able to get them in time to help her because they work best when started early. How people feel about DMDs tends to vary with a few factors: personal experience, what they’re told by people they respect/like, how much they believe research/science.
My personal experience is that DMDs work for me. When I’m on one, I have virtually no disease activity. When I’m not on one, I have loads of relapses. However, this is not the case for everyone. We are all very different so the benefits we get from DMDs are different too. (Now the science…) On average, DMDs reduce the number of relapses people with RRMS get by about 30%, but they also reduce the severity of the relapses that we still get, they delay the onset of disability, reduce disability, can help to slow progression and can even increase life expectancy. Are they guaranteed to work for you? No. They aren’t. But, to my mind at least, it’s a bit of a no brainer to try!
Some people make a great deal of the side effects; how terrible they are. They aren’t. What’s terrible is what MS can do to someone. Yes, I’m biased, but red splotches and the occasional bruise plus temporary flu-like symptoms that are helped by paracetamol and/or ibuprofen versus the chances of permanent disability??
The other major benefit of going onto an injectable DMD is that, if it doesn’t work, you become eligible for the second-line DMDs that can reduce relapse rates by as much as 81% on average and make a big dent in progression. These do come with much more serious potential side effects, but it’s good to know that the option is there if you need it.
As far as the actual injections go - they are a doddle. I was bricking it when I first started, but within a couple of weeks it was just routine, something I did in between washing my hands and brushing my teeth. So please don’t worry about the injections. You don’t even need to see the needle if you pick an autoinjector with a covered needle! (Btw, the videos on the msdecisions website make it seem much more complicated and harder than it is: reality is a lot less hassle.)
As far as time off work goes: if you need time off, then you should take time off. People with MS are automatically covered by the Equality Act (Disability Discrimination Act in Scotland) and part of this is that time off for relapses does not count as sick leave. Another part of this is that employers have to make “reasonable adjustments” to allow people with MS to stay in work. That means things like providing extra equipment, changing working conditions or hours, allowing you to work from home more, etc. Of course it’s best to keep working and to work as well and hard as everyone else, but at times you may need help to do this or it may simply not be possible - and pushing yourself to keep going will surely backfire and end up in a longer, more severe relapse. So please listen to your body and rest when you need to. Resting won’t make anything worse.
Thanks for the advice. I saw the MS Nurse today and have decided to go with copaxone as it doesn’t have any depression side effects. I had PND after both my kids and don’t want to increase my chances of that again. I have been a bit down the last few weeks anyway after the diagnosis so I would rather pick myself up than risk another problem. She says I should hear from the Copaxone Nurse in about 6 weeks and then the fun will begin. I have asked for a parking space closer to the entrace at work as the walk up and down to the car park is taking longer, which in the pouring rain is no fun when you can’t make a run for it!
