Hi! My name is Nataly. I’m from Republic of Moldova. While reading this forum I found out that there exist a kind of MS nurse, and it must be great. In my county MS is known for some years, and the same researched as an illness, that’s why there are few doctors who try to treat such patients, and those aren’t real professionals. My sister has MS for about 3 years. We live close to each other, so usually she tells me everything about her. At the beginning it was a shock for the whole family when we found out about MS, but every time after staying in the hospital she seemed to recover, and after every 3 months it was the same. The most difficult thing is that I want to do smth for her but don’t really know what. It’s just the situation she has to decide herself what medicine to take, so doctors tell her to make the decision. It’s so frustrating… they should do that. and now she is just after hospital but this time she walks worse and is worried if it will be better,. She’s changed the medicine, now she takes Interferon injection. She’s my elder sister, I used to ask her advice, support and she was a ind of model for me, now things changed, I see she needs that, but I really don’t know what to do except staying with her, helping at home…but it doesn’t really help her pass it. I feel useless…confused…
For most people, it’s the same here in the UK - the doctors won’t tell you what to take - it’s your own decision. The reason is that there is no clear winner, among the first line drugs, in terms of effectiveness - they are all about the same. So it’s up to the patient which one they feel most comfortable with.
There is a difference if people have a particularly aggressive form of MS. In that case they will normally be steered towards one of the more powerful but riskier second line drugs, and it won’t just be left to personal choice. But I just wanted you to know the reason your sister is not being told which to take may be that there is very little difference, so it’s more important she gets the one SHE feels most comfortable with.
Also, in case you didn’t already know, this pattern of seeming to recover, but then getting worse again is typical of the most common form of MS - Relapsing Remitting. About 85% of people with MS are initially diagnosed with this kind. It means they have attacks, from which they recover to a degree - but not always completely.
MS nurses are not all fantastic - all I’ve ever been offered is a cup of coffee. As it was a long bus ride or a £16 taxi fare to the hospital (sorry, no idea how much that is in your money - but it’s quite a lot here), I did not accept. Not spending all that time and money just for coffee and a chat. If all I want is coffee and chat, there are nicer places than a hospital!
I just didn’t want you to think everything in the UK is fantastic, compared to Moldova. The standard of care here is very variable, with a lot depending on luck!
You cannot cure your sister, so it’s important still to have your own life, and your own goals - not try to fix something that cannot be fixed. It’s good that you’re there for her, of course, but try not to feel bad that you can’t make everything OK for her. It’s not your fault you can’t do miracles.
Have you asked her if there is something she’d like more help with? Sometimes the simplest way is just to ask!