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Diagnosed last week - drug conversation tomorrow

Hi everyone

As the title says, I was diagnosed with MS last week and tomorrow I have an appointment with the MS nurses to discuss DMD’s.

The nurses sent me information which I received on Monday about the different types of DMDs and it made for some scary reading! The nurses said to have a look at the information prior to the meeting and then we’ll decide on the right drugs. I’m feeling a little overwhelmed, some of the side affects sound frankly terrifying, I know I need to make a decision so I can start treatment as soon as possible but I just don’t feel prepared. I’m sure this is totally normal and that the conversation with the nurses tomorrow will be helpful but I just can’t help but feel bewildered by it all.

how did everyone make a decision?

Thank you for reading.

Susie x

Hello Susie

When I was first presented with a choice there were so few options, that it was easier. In a way. I still didn’t have any useful guidance, so I understand your dilemma.

Have you seen https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid it’s not likely that you’ll have a completely free choice, it depends what has been set up in your area.

But it’s worth looking at the whole lot. When you make your choice, it’s all about potential relapse reduction versus possible side effects. The nurses will know the different drugs better than you, so use their knowledge, but make sure you are happy with the choice that’s made.

Try to get a companion to be with you at the appointment tomorrow. Get them to consider the same things you are, it’s different when you’re not the one to take the drug. So their view is valuable.

Best of luck tomorrow.

Sue

DMDs come with detailed patient information about risks and benefits so that you can make an informed choice about whether to take them and, if so, which one. Scary stuff, I know, and I am sorry that life is throwing such a lot of troubling stuff at you.

But at least you DO have a bit of damned choice with DMDs! I don’t remember relapsing/remitting MS offering me a patient information leaflet to help me to decide whether to have it or not - do you? If I had been offered the choice on whether to have MS, I would have said no thanks, obviously, as would you. But MS did not consult us on the matter because MS is a bully and a thug.

So my suggestion is that you look at DMDs in that context: you have been landed with MS without the option. DMDs are a real opportunity to regain a bit of control over your situation - in particular to take steps to stay as well as you can. That’s the way I have always looked at it anyway, and I’m now a veteran of 17 years (and counting) on DMDs.

All I’m saying is, don’t be tempted to be more scared of DMDs than you are of MS DMDs are polite enough to ask you to take account of their risks before you decide to proceed. In contrast, MS, being (did I mention this?) a bully and a thug, can just mug you without warning or mercy. Personally, I have always been keen to get my defences in place. MS is a dangerous and destructive enemy.

Good luck tomorrow. Put your listening hat on and see what the nurse has to say to help you with your decisions.

Alison