Thanks to better treatments becoming available the average life expectancy is coming down all the time and is probably a fair bit lower than your estimate. The other really good news is that averages are just that and take no account of those adopting a healthy lifestyle. If you don’t smoke, can manage some exercise and eat a good diet of fresh food, then the likelihood of a
long and healthy life will only increase. That’s the theory anyway.
Thinking about your dilemma, it seems to me that you have two very different issues to deal with. The first is your distress at scan evidence that your MS is on the march. That is the kind of news to weep and shout and curse the moon about - it’s rotten news, and it’s not fair and it deserves a full-scale emotional response - let those emotions out and get the distress out of your system. With luck, that will leave you with the calm to approach the entirely separate DMD decision with a cool head and a clear, level gaze.
I had my diagnosis in 2014 and my first relapse just a month ago. I never felt like I had MS and never really accepted it. I was thinking mine was one of the ‘good’ ones.
I am now waiting for a neurology appointment to start on the DMTs.
As the age progresses the recovery from attacks get worse. So I would say definitely get on DMTs but learn all your options and the best treatment. I think share your concerns with the neurologist. Good luck!
I used avonex when I was first diagnosed and used it for 4 years. That worked well for me at the time. I am not very up to date with the new DMTs as I stopped using them in 2018.
However, I will discuss the ocrevus one with the MS doctor as it seems to be the most effective.
This first relapse after 9 years made me realise that I really have MS and I should take it more seriously. I just don’t want to have surprises and be disabled. So whatever is the best I think l’ll try that.
Also I think the ocrevus one wears off after couple of months so if I do not respond well, then I will probably try another DMT. Let me know what you decide. All the best!
Thank you. Interestingly my neuro wasn’t pro-Ocrevus for me yet and thinks Kesimpta is a better option. Anyone have any thoughts/experience of this drug? Good luck too xx
Hi again,
Just had my appt with the MS doctor today . And she offered me ocrevus or kesimpta and asked me to make a decision this week.
I would love to know what people experience with Kesimpta too. I think I understand you better now, as this drugs are even more scarier once the doctor tells you about the side effects.
Did your doctor explain to you why they think you should use Kesimpta?
Hi @lily34 I had almost decided on ocrevus but my consultant advised against. She said kesimpta safer and less of a hit on the immune system. She said people are now showing ocrevus can be too big a hit on the immune system and are having to take a break so for me I’m taking that advice subject to bloods and chest X-ray being ok. Good luck with your choice, wanted to share her thoughts xx
Hi, I’ve just started it now. I’m on three 3rd weekly dose. Before that I was in tecfidera and I found it so difficult. The hot flushes were awful, you had to take with food and twice a day. I found myself forgetting it and then playing for it the next time I took it with a full body hot itchy red flush. But, that may just have been me.
Kesimpta in comparison is a dream. Admittedly, I’m tired today (took it on Monday night), but it’s just lovely not having to forget/take tecfidera. I’ve got older boys, but I think this drug is going to free my world up, just once a month, not twice a day… but, again, that’s my experiences and yours may well be different. They send a nurse around to your house to show you how to inject and it’s simple. It is a chemo drug but we are on a low dosage I’m guessing? Anyway really thinking of you. You will feel much better when you’ve decided, the MS tool on the ms trust website is brilliant. Xx
I’ve been on Kesimpta for 18 months and have gone about my life as normal. Nothing out of the ordinary infection wise has happened and that was one of my concerns.
It seems that Kesimpta is favoured at the moment (from other post I’ve read, with some people even being asked to consider swopping) as it doesn’t require infusion appointment slots, so is quicker to get started.
