After being in hospital most of January and undergoing a MRI and Lumbar puncture lesions were found on my brain and spinal cord. I went to A and E twice the first week in jan and they didn’t believed me that I couldn’t feel my body (they thought it was in my head at first) It was initially diagnosed as a ‘clinically isolated syndrome’ and I’m not sure if I was being naive or not but I thought once my sensation came back all would be ok and it was a once off. They booked me in for a repeat MRI which I have had and now have the follow up apt this coming Monday. They said I needed 2 separate incidents to diagnose me with MS.
At the end of February I started to feel better but then my right eye went very strange and I had double vision it was so extreme I really didn’t know where to focus – would this be my second incident? My chin also went totally numb and I hadn’t had anything on my face prior to this. It lasted a couple of weeks and then it just went.
Generally I am a very positive up beat person and I’m fine really but I keep getting so low and sometime have uncontrollable sobs … I don’t trust my own body anymore, I jolt all the time and it’s scary. I’m 29 and about to start on a new career I want to have a baby in a couple of years with my partner but I’m afraid about the future and I’m afraid he won’t want to start a family with me now as he will be worried I won’t cope.
I don’t know if anyone has had a similar experience or advice at all.?
I got diagnosed yesterday but have had suspicions for about 4 months now. It is extremely scary. I have always hated taking medication but now will probably have to. I have given up on my dreams of having children because I could not live with myself if they got MS and I put them through what I am going through - they would be far more likely to get MS because I have it. I have mood swings all the time. One day I feel quite positive and another day I’m crying all the time. What you have to remember is that at this stage you don’t know what will happen in the future or how it will affect you. Coming on here is helpful because feeling alone is horrible but this shows that other people have been through this. Good luck in your journey x x
I am sorry for all the pain and symptoms you are getting, I am not sure what the best thing is to say other than I am thinking of you and I hope you feel better in yourself soon.
This all must be a shock and thinking of your future aspirations being harmed must be hard. I can say anything is possible, you may just have to think differantly and there is always a way for everything. Don’t give up and believe in yourself and let others help and support you on your journey too.
Hello Claudia, first let me say hi and welcome you to the forum. We are a friendly bunch here, and try to offer each other support, advice, a listening or whatever you need. Even rants are allowed, as we know how much we need to let off steam and we do get what others are going through.
You are very newly diagnosed (not sure if you mean last Monday or next Monday?)and it is quite common to feel tearful, frightened and all over the place. It is a helluva lot to take in. It can take a few months or even years, before you find your way and learn to cope.
Cos that`s what folk with chronic conditions like ms do…we cope, get by…
I`ve had marvelous help from my GP, district nurses, physios, wheelchair services and others.
Hang in there hun, things will get better once you`ve had time to take it all in. Try not to think/plan too far ahead.
With a good network of help from family, friends, professionals, you`ll cope.
Ladies, I’m only DX 2 months ago , after having a year from hell leading up to it. Last year I thought that my life was over, but gradually Im coming to terms with it, and something’s are better, Spending more time with my family instead of being consumed by career, recently started treatment and met a lot of great,caring support along the way, not forgetting the wonderful people on here, Polly my surrogate nan has always know the right think to say. So yes it’s hard and I’m not saying there isn’t times it scares the hell out of me & my future. But it will get easier and better and as others have said, we don’t know what the future holds for any of us. Take care Gray xx
Thank you so much for your comments - I really really appreciate it… Its so lonely at the moment and a tad terrifying but your words have made me feel a bit better so thank you. and poppyseed you are right there is a way for everything and maybe i just need to find a new one now?
I find out for sure on the 31st so will let you know xxx Take care x
Hi claudia i was dx on monday and will be starting treatment in the next couple of months. I also was soo low but have started citalopram a month ago and is helping with all that. I asked the neuro about having children and told me that i would b fine to have children i would just have to come off my meds for ms for 3 months before i wanted to try for kids. He also told me the risk of passing in on to ure children is so silm its not worth thinking about. You cud b well for many years and i would not want to think i put off having kids r not at all because of wat if? You could be hit by a bus tomorrow! Lol i no its hard to take it all in i still have days i cry and cry and then have really good ones. I am just taking all as it comes at the mo. I am even going out for my birthday with my twin this weekend and has given me a real lift. Hope u app goes well for you Love charlene x
I was diagnosed in January and spent a lot of last year crying and thinking I was going to die. I’ve since found out you can live a normal life and even have kids, you just need to adapt your life and take it a bit easier. Things do get better really quickly
Thanks for you message - it made me smile - and really pleased about the having children part, I was going to ask them on monday.
I think once Monday is over I will start adapting like you said wilf - thank you. I hope you are both ok too as its a really recent diagonsis for you both also.
There is not easy way of dealing with how you are feeling now - it is just one of those not-good times in a person’s life that she just has to grit her teeth and get through. Just try to be gentle with yourself, and do not speculate about problems that might never happen - you have plenty on your plate as it is. When some time has gone by, you will feel calmer and more able to think about things. Try not to rush it.
When a person suddenly finds that she might well have a life-changing dx round the corner, it feels as if the whole world has come adrift from its moorings, and everything - body, health, prospects, life - seems suddenly unpredictable and impossible ot rely on. But you will feel solid ground under your feet again. Just hold on to that thought, and hang on in there.
Thanks again for your messages. I got diagnosed formally on monday - there are new lesions on my brain - I will start treatment in a month or so - I think I am being placed on a drug trial so will see how that goes - Good thing with that is I get scanned monthly and will be monitored closely.
I was terrified the week before my appt but now I feel calmer and ready to take it in my stride! Its not the end of my (our) lives
xxx Take care x