@Danielg 

Last reply

Danielg

The struggle

I'm not going to lie, my struggle with ms has been hard . I'm now 20 and I had my first course of treatment on my 18th birthday. Unfortunately, the nurses forgot to give me my steroids before giving me lemtrada and so I had a very bad reaction to the point where doctors and nurses thought I was dying. I was vomiting, they were not able to find a vein for an IV and finally I passed out. This happened at King's College hospital and honestly it messed me and my family up really bad. But I got through the rest of the treatment because I knew it would be helpful. I had my second course of treatment the day after my 19th birthday which went perfect. After the bad reaction to a messed up course of treatment the first time, I had no other effects from treatment except for bad fatigue. However, after this course of treatment about 2 weeks later I got pneumonia for the third time in my life and nearly died from that alone. However after 13 days in hospital I made a full recovery and am now doing fine. Before treatment, I had speech problems, my hearing was a lot worse and I was having to use crutches to walk around at the age of 17 (was probably going to be in a wheelchair by 18 if I didn't have treatment!) So I am very grateful to have gotten this treatment and be in recovery. But as of right now I have very little support going for me and my ms. When I was diagnosed I was taking my A-levels and applying to uni. I will admit, ms made my uni life extremely difficult and I got ill quickly and harshly there. Nothing has been the same since mu diagnosis as I went down hill very quickly even with RRMS, there were letters from my neurologists explaining how it was acting more like progressive ms and so needed quick treatment. I was told, after having several MRI's, I've had ms since around the age of 4 based on the lesion on my optic nerve. A very young age to develop ms symptoms as well but it is the age where my vision became blurred and I got a lazy eye. I just needed this little rant as it's been a hard few weeks recently and in my home I never really get to express my true feelings. If anyone has anything to say please comment and let me know anything.
@Vixen

Hello @danielg, wow, that is some story. There are a fair amount of young people on this site, so hopefully you won’t feel so alone. You seem to be bearing up remarkably well, you come across as being really strong and resilient. When I was your age, the landscape for MS was bleak. There was pretty much nothing. Today, the world is a really different place and there are so many promising treatments on the horizon. So, are you still at Uni? If so, are you getting a good level of support there? And it sounds like you live at home? I’m so sorry that you have been pretty much robbed of the years around becoming a young adult. That totally sucks. But, you have your whole life in front of you. The thing I have found since being diagnosed two years ago, is that you can still have the same plans for now and the future, but you sometimes have to look for other creative ways to get there. I’m glad you’ve found Shift. It’s packed full of people like you who sometimes want to rant, sometimes just need to feel connected, and sometimes need to ask questions. You have lots of support here. Take care, keep posting, and stay indoors out of the huge sunlight today! X

@DominicS

Forgot to give steroids? FFS, if it were me if be onto a lawyer ASAP. There are specialist medcal negligence lawyers, just Google.