EditedLast reply


Just a vent & meet my MS nurse

Hi MSers First of all hope you are all good as much as we can me. I write this as my body tingles. So today I had my appointment with my neurologist pharmacist and finally meet the MS nurse. From 9 am till 11:30 am and getting medicine for the body tingling. I also did blood tests and although might seem normal, I asked her what is a flare up because I always found it confusing. I think overall it went well. I was told you look good, better than last time you were so depressed. Wow cheers, I mean that was when we first met and I was diagnosed with MS. Both said I want you to forget you have MS and move on with your life. I really don't like this attitude, this isn't positivity for me. I also suffer from migraines, you can't pretend you don't have something, you can be positive and manage things but let's not throw glitter at something serious and be like well it's fixed now. I told her I do have MS, like I have migraines, it's about managing not forgetting I have it. I understand they trying to be positive but I find it more of a delusional attitude compared to anything. Why do we need to pretend, it's about acceptance and managing the best way we can. 🙂 I see it as it is my invisible companion. Also found out you might have a relapse and infection but they don't test for Thryroid when they ask for blood tests which could be infection. I mean that doesn't make sense, you have to ask the GP for that lol. Just sharing my experience, I am not bad mouthing them as today they were actually better and this is a better hostipal. But hey I look fine when I am not fine, it's not your job to tell me I'm fine. That's for each individual to answer. I'm ok and trying my best living with my invisible companion. 🙂

I think you have the right attitude - our symptoms remind us on a daily basis that we have MS so how can we pretend we don’t have it? Like you say, we have to learn to accept it and live with it. It is very frustrating when people assume you are well because you don’t look ill. I also only recently met my MS nurse as I was diagnosed during Covid. I wonder if you could be referred to a specialist to help with the migraines? My previous neurologist specialised in treating headaches. Also, I only recently found out about a UK charity for people aged 18-35 with MS. It’s called MS Together. I have found it helpful so far.


@kate13 I am on a migraine management plan and life has so much better and thanks to my headaches I found out I had brain lessions & MS. Definitely, agree. This delusional positivity just isn't necessary or healthy. Will check out the charity, thank you. 🙂