Hiya Just feeling pretty scared and out of my depth at the moment. I was told at the end of last year that I had a 4/5 chance of getting MS after I had an episode of loosing my sight partially for about a month. They found spots on my brain from an MRI and that a second episode would result in a full diagnosis. Yesterday I went for my neurologist appointment where it has been decided that I will have another MRI to see if the inflammation has increased and if so, be formally diagnosed. To be honest I don’t think it really hit my before yesterday and now all of a sudden I don’t know what to do. I feel fine and don’t understand how this is going to happen to me. I just can’t contemplate I guess. I’m trying to get my head round it but it’s just so hard to grasp and I don’t even know where to start. I just wondered if anyone has any advice about this awful limbo period. I keep on nearly crying but then feel confused as I don’t actually know what is going to happen. Even after the MRI I will just be waiting for the second episode to understand more of what my life will be like from now on. Just don’t know how or what to think. Everyone around you says how strong and brave I’m being but I don’t feel like I’m being either of those things as to me, nothing has changed. I think yesterday, however, made me finally revise that things could change and I am quite scared. Just any advise would be great. Thanks
I hear you I really do. I’m in the same boat :(. Where about are you in the country?
Gosh not fun at all is it. I’m in Oxford how about you?
Hi, I was you back in March. I had numb legs two years ago and was told 85% chance ms. I then went to follow up appointment in March and honestly thought he was gonna discharge me as I felt so fine, instead he sent me for a second MRI which I had done in April, I was then diagnosed as there were new lesions. It was awful the time between waiting and I actually paid £700 for a private MRI to get it done quicker!, not sure this was a good idea but speeded it all up. This time is just horrible but you need to just sit it out… It’s gonna be an awful worry but you’ve just gotta get through it. Once (if!) your diagnosed it gets easier, you at least know what your worrying about and can do something positive and get on some drugs! Everyone says now is a good time to be diagnosed and i think it’s true, there is so many great drugs on their way. Keep your chin up, keep smiling and carry on as they say!
You sound just like me. I was only dx this morning, but have been going through the process since last October when I had Optic Neuritis. Had an abnormal brain scan at the time and was given similar odds of developing MS. Had bladder issues in Jan/Feb so neuro sent me for a second MRI. Got the results this morning and due to increased number of lesions and in different areas, the neuro gave me a dx.
The waiting was the worst part. I feel calmer today than I have in a long time because the uncertainty is gone. Waiting to hear, what you assume will be, bad news, is torture and I wouldn’t wish it on anybody.
I kept feeling bad and guilty for worrying and crying about it. What if it turned out not to be MS and I had made all this ‘fuss’ for nothing? But it’s not nothing. Neurology appts and MRI scans are horrible, scary prospects and anyone in their right mind would feel stressed, upset and anxious.
However you deal with things is just how you deal with them. If you feel upset, you are 100% justified. Be kind to yourself and take it as easy as you can
Sorry it’s taken me so long to reply and thank you for your kind words both of you. I have been moving house and it’s all been pretty stressful really but luckily has taken my mind off things a bit. I have been given details of my appointment for my second MRI, it is meant to be at the end of this month. Even though the waiting has been so hard and I would like to know the outcome I am not starting to get scared of what the results might say. I don’t know whether to push back my appointment a month or so as at the moment I am actually doing my Masters degree and writing my dissertation (which needs to be completed by September.) I feel that if the news was bad and I got formally diagnosed I might not really be able to have the strength to finish my uni work but then I also think am I just being a coward and trying to put it off? Is it better just to know? Any thoughts you have would really help me out as I’m really not sure what to do.
I do believe, like both of you have said, that maybe being diagnosed would in some ways be a relief as it is no longer sitting on the edge of your seat, worrying about the worst outcome. Also hearing how positive you both are and strong has really helped me to feel stronger too so thank you.
I hope you are coping ok with the new diagnosis and are keeping still strong and positive
Much love xxx