Good evening, Hi all I received the news today that I have MS and if I’m honest am very scared and worried about it. I started this only a week ago when I went to the optitions about double vision and suggested I have it checked at the hospital, next day I get called in and end up having various tests including a MRI which found swelling on my brain. I got an appointment to attend York to have more tests which I was told that I indeed have MS which was the first I ever knew about but after speaking with a specialist found that I have had signs for the Las four years after going through my medical history most of which was unexplained untill today. After finding out I am left very confused and honestly ery numb as I don’t know what to expect what to say to my wife and kids how it’s going to affect my work my life I just feel very lost. I don’t know if I’m putting this in the right place but at nearly 27 recently married with four step children and a son I feel myself asking why what did I do wrong and how do I move forward. I did this more to get it off my chest and maybe find some help from people who will have proberbly felt the same as I did. I feel stupid that I never came to this sooner and as I say why. I’m sorry if this seems a little well I don’t even know I just don’t know what to do.
Hi,
Welcome to the Forum. This is probably the best thing you could have done as there is a vast amount of wisdom, empathy and understanding here.
You can get information from people with years of experience of MS to draw on. Facts about medication, symptoms, benefits, employment rights or if you just want a sounding board for anything on your mind then feel free - there will always be someone here who will know what you mean. And you can talk about anything - it doesn’t matter if it’s about embarrassing stuff like bowel or bladder problems there isn’t anything that’s taboo here.
The best advice I can give you is Stop Worrying. Your life today and for the foreseeable future will be exactly the same as it has been for the last few years; except that you, and your doctor, will understand what is causing your symptoms. It sounds to me that your double vision was a classic symptom of MS called Optic Neuritis. This usually clears up after a few months but you might find that your vision isn’t as good as it used to be. (It was the first symptom of MS that I was diagnosed with about ten years ago.)
You ask “What did I do wrong?”. You haven’t done anything wrong. The experts don’t know what causes MS but it doesn’t seem to be linked to any lifestyle choices. It just happens and there are about 100,000 people in the UK with this stupid disease.
Eventually you’ll get all the answers you need. But, more importantly, you’ll be among friends; starting today.
Best wishes,
Anthony
Hi Koi, welcome to this group. You will find support, understanding and information here.
Well blimey O`Reilly! No wonder you are in shock. Who wouldnt be finding all this out so suddenly?
But what about the swelling on your brain? That`s not the way lesions or demylination are usually described. Has it been decided if anything else about it needs to be done?
It is quite unusual to be told you have MS without a lead up to it…but I guess the 4 years prior did mean things were happening and it must`ve seemed nothing to seek advice about.
So what happens next? Youll probably see the neuro again and medication will be discussed , if its appropriate. An MS nurse will be assigned to you. We can call them to ask about all sorts of things, when we arent due to see a neuro.
MS affects different people in a million different ways. Many people continue to lead a normal life and keep working and life is good.
Others find it causes fatigue, plus other issues. We tackle these in different ways. We can adjust our working schedule, employers have a duty to make adaptations if you need them.
Some folk take early retirement if they find working too difficult.
But give yourself time to absorb it all…your family needs that too.
And no, you did NOTHING at all to cause this…it has no discrimination. It chooses us…we certainly dont choose or invite it into our lives.
Once you get your meds, support and head round whats happened, youll cope. We are here for you.
I`ve been at this game for 22 years!
Take care chuck.
Boudsxx
Hello, This is my first time posting on here and just thought I’d let you know that I’m in the same boat. I hope you’re ok? I was diagnosed a couple of weeks ago and I’m still in shock. I think you, like me, need a bit of time to process the news so just take your time. I’ve told my close and family and friends and they have been so supportive about it. There’s some really good information pamphlets on here for yourself, friends and family which may help you. I have to admit though, I had to build up to reading them over several days as I kept blubbing when I read certain things about potential symptoms. I have a supportive team in Nottingham. There are MS nurses who I can talk to and I ask them loads of questions all the time! Do you have that kind of support up in York? If you can, see at least if you now have a neurologist and MS nurses to talk you through the next steps. It may be worth talking to them to find out what medication you can go on and sooner rather than later. I’m on Copaxone. When I came round to making my decision to start taking my medication, I still had to wait 4 weeks for it to be made and delivered and another week to get shown how to inject myself. I don’t want to worry you, I just want to make sure that you can get the ball rolling so that you know that you’re doing everything that you can. How are you feeling in yourself? Wishing you all the best in these now extra uncertain and troubling times. Sarah
Sent a private message to you, Koyli55002. Nothing important or urgent…
Hi all so it’s been a hard month with my first appointment been over the phone so I have rrms and went for my first dose of tysabri, after the treatment I felt nothing if I’m honest nearly a week after I feel no better nor worse. What are peoples view on this drug after reading up I’m not so sure I like the sound of it. I seem too have developed a well nothing stops it so why should I bother attitude, iv acknowledged and come to terms with my diagnosis. Also me and my partner have discussed moving from bridlington to around Blackpool Preston way, how have people found the move for there treatment? I’m going to start posting and reading the forum now as I wish to gain more knowledge from people with more time with ms than mysekf