I’d just like to share my experiences of MS to date because I searched for a case like mine not longer after being diagnosed, two and a half years ago and didn’t find much. I need to share that I am ok, pretty functional and mostly normal. I realise that I may not always be this healthy but at the moment I’m fine! Two and a half years ago I had a terrible relapse; my eye turned right in causing double vision, I had horrible vertigo making everything move around me, server headaches and nausea, I could hardly walk and struggled to feed myself. This lasted for three months and felt like a life time. Symptoms took about 8 months to completely clear and steroids really helped to clear things! I didn’t believe in them and put off taking them, but they really work! If it ever happens again I’ll be straight on them.
Since all of that I’ve been mostly normal. I work full time, I walk my massive dog, I even did go ape (climbing trees), I drink at the weekends and I’ve been to Cambodia (all over) and turkey twice, soon hoping to go to Oman. I hope all this helps some others who, like me, got diagnosed and thought it was all over. It’s not xxxx
Nice to hear from you both! It’s good to hear that people can cope well. I’m a nurse and a therapist too. I think this has helped a lot. So good luck with your training! I’d stay away from the night shifts though, they’ll really bugger you up. Hope your placements support this? They should x
That’s great to know too! I know there are nurses out there with MS but I haven’t met one yet! And yes my university has been good … They said not to do nights or 12 hour shifts although I’ve done a few long days and today is one ! But they seem to be fine. My friend is more tired than me! I’m with a home treatment team at the moment so they don’t do nights anyway when you say therapist, what type of therapist? Rosie xxx
I can also manage a 12 hour day on occasions, it really is the nights you need to stay away from. It’s morally wrong to put a body with ms through that stress. I’m currently on a home treatment team (last 2 years) I work for CAMHS, always have-love it. I’m changing to clinic work in a few weeks, which I prefer because I get to do more long term therapeutic work. I’m an EMDR therapist. You can train to do that one year after qualifying. The training is quite cheap £1400, takes one year and it’s really fun. It’s an amazing therapy. Get someone to show you it if you can, let someone do a sample on you.
As I said before, I think I’ve had ms since I was 27 and back then I used to do loads of mad hours on the wards and I was absolutely fine. Since the big relapse I do get a bit more tired and it kind of taught me to look after myself more. I put my health first. You may not ever even have a big relapse! I hope I won’t have one again, but of curse you never know. What part of the world do you work in? I live in Stafford and I’ve worked in Birmingham, Derby, Telford and Shrewsbury. So I still do massive commutes everyday.
That’s so weird, I’m at Birmingham university and am with the South East home treatment team at the moment! You’ve probably spoken to my mentors ! I am nearly at the end of my placement though just a few more days! That’s sounds great, I’m glad you enjoy it, I love this placement too.
I live in Dudley so get a train to the oleaster at QE so not too bad
I’ll look into EMDR, don’t think I’ve heard of that before ! Yes it’s important to listen to your body I totally agree. I sent you an inbox message with some questions about nursing and MS hope you don’t mind
I’m local to you both and also work in the care profession!
I had my first symptoms (massive relapse) over three years ago and have been fine since. I don’t feel like I have MS and for the moment at least, carry on with my life as normal. I did start treatment as soon as possible which I think has helped.
thats good to hear! Nice to have all these things in common. Interestingly, I became more unwell on treatment. Rebif wrecked my immune system to the point of causing constant infections which in turn affected the MS. I’ve been drug free for around one year to try and rebuild my immune system. I’ve continued to be pretty healthy. Trying to decide now if I should have kids or go onto another treatment. Waiting for MRI results to see if anything’s changed up there eeeek! What DMD are you on? Also Rosie are you on one?
Kids sound like a nice idea:) I am going to try in a few years but I understand you have to stop taking medication and then possible relapses occur after pregnancy. I hope your immune system builds up okay.
yes I’m on tecfidera, and started it last July/August. I’ve had no problems with it which I feel lucky for. I only get minor side effects like itchy tingly scalp, it’s really weird. But other than that no problems. I take 240mg BD.
I had Lemtrada. I have my second round in a couple of months. I liked the idea of induction therapy and getting it over with. Sorry to hear of your experience on Rebif. Rebif’s efficiency is moderate at best, there are much better drugs around.
Oooo, I’ve been thinking of lemtrada. I too like the idea of getting it over with. I felt ill all the time on Rebif. I’d rather feel ill for a bit then get on with life. What were the side effects like from the whole process of lemtrada?
if you want to talk about experiences pm me