Ok, so i was diagnosed early September this year with RRMS. Im 23 and have very mixed emotions about this whole thing and don’t really know where to turn. I’ve had my MS nurse appointment and have chosen lemtrada as my first DMT, but have been told i could be looking at a start date of march/april next year? This diagnoses has hit me like a tonne of bricks, in hind sight it seems i have been struggling with thos disease (if i refer to it as such) for a few years but no doctors have picked up on it I’ve recently been having a lot of issues with my hands and left leg but i still don’t know when/if i should be telling anyone without coming across like a complete pest! I have felt extremely isolated even though my close friends, family and work know about my diagnoses but i feel likebecause i don’t have extremely severe symptoms im at the bottom of a list whilst things slowly get worse (apologise now for me being a complete drama queen) I just wandered if this is normal to be feeling this way? Does it get berter? Should i be thankful it isn’t worse, even though i currently feel like im just counting down the days until i need a wheelchair
your ms nurse is the one you should be reporting new symptoms to.
your GP is always easier to get in touch with and he or she will enter it on your medical records so the neuro will see it.
march seems like forever away but it will arrive.
lemtrada is an excellent choice of DMD, so hang on in there.
Don’t apologise for being a drama queen. My wife almost certainly has Ms and has some fairly severe symptoms(as far as we are concerned but plenty have worse!)and the shock when the worst hit and ms was mentioned hit us both hard and whilst i tried to support her we struggled to really talk about it and she was in denial for months. It has taken many months to get used to the idea and for her there hasn’t been a huge improvement in her overall condition and some new symptoms have come along. The neuro has said she has quite advanced RRMS getting close to the progressive stage.From reading this site it seems there are some good Dmd’s around and hopefully your MS has been caught early enough and you can still have a good life.But nothing wrong with being totally pissed off!
I guess there is not a right or wrong way to feel.Many say keeping a positive mind is important and others get even more pissed off hearing it! Everyone is bound to pissed off if they get MS aren’t they?
Before i found this site and was googling MS one of the 1st things i came across was this http://youdontknowjackaboutms.com i hadn’t realised Jack Osbourne had MS it totally shocked me!. I looked briefly but soon decided my wifes condition was much worse than his and wasn’t really relevant to her but if your symptoms are not too bad and as a younger man with a long life ahead of you if you can keep a positive mind,it may be a good and interesting read?
All the Best
It’s not surprising at all that you’re messed up about your diagnosis. After all, at your age, you’re meant to be going out, having fun, working towards a career and having a life.
Being diagnosed with something like MS at your age is bloody horrible. It’s bad enough at a later age, but in your early 20s it’s a nightmare.
Lemtrada sounds like it can be a total life changer. So although you may have a few months wait before the treatment, at least you can have Christmas without the after effects of treatment.
Have you seen https://shift.ms/ it’s another MS forum, but one with a lot of young people on it, and many of them have had or in the midst of having Lemtrada.
Meanwhile, we will do our best to support you while you wrap your head around your new reality. Don’t expect it to happen overnight, and don’t expect to ever feel happy about it. It’s perfectly ok to always hate it. You never have to accept it.