I was taken into hospital on the 13th feb with pins and needles down my right side and slurred speech. They did loads of scans and tests and walk into my room on Monday and said you have ms. Not sure how to react I broke down and dumb struck. They then put me on five days of steriods that finished on Friday last week. I don’t know what to do now. I don’t know who to speak to or what is happening. I don’t feel right and always feel wobbles and speech is not great. I’ve got no information to say what and where I go. I’ve looked through the pages for advice. I just feel stuck. Do these symptoms go away is it the steroids that’s making feel funny. I can’t even feel the heat of the bath water on my lets it’s just tingles. I’m even peeing non stop 6 times in 3 hours. My chest feels squeezed all the time. I can’t swallow and can hear my breathing is not right. I’m so scared. Feel like it’s never going to get better. Really need some advice please xx
Hi Sammy
Slurred speech was one of my very first symptoms too . It’s obviously a very worrying time for you as the hospital clearly haven’t given you much information since discharging you. Just to reassure you about the speech, there’s every chance it will continue to improve, I think mine took about a month to get better and that was without steroids. Try to relax when it feels a bit odd still and talk slowly as it will help. It is quite likely the other symptoms will gradually get better too but some things take longer than others.
I think I would visit your GP if I were you and ask if he/she has any information about follow up. In my case, I had a follow up appointment at neurology about a month after I was discharged from hospital. I was told I had had one episode of demylination and it would be MS if I had any further attacks. (Unfortunately the ward doctors are very good at blurting out diagnoses without knowing the full criteria for diagnosing and without breaking the news in a gentle way or even explaining about the condition!! They did the same thing to me and then wondered why I burst into tears …) You might also want to discuss your lingering symptoms with your GP and see what medication he/she can suggest in the meantime.
Take care
Tracey xx
Thank you so much Tracey. It’s really hard. It’s like having a few to many all the time. So worried what to do. I went to my doctor he was not happy with the hospital and called them as I didn’t even know my consultants name. I’ve got an appointment with him next Tuesday. Just needed to know this might all go and I feel normalish again xxx limbo land is very true. !!! Sammy xxx
Hi Sammy
I can’t advise much im afraid as it’s all new to me too but defo as Tracey states
get in to see your doc for full details book a double appointment also theres
wonderful support & fantastic folks on here all the best
sheep
Hi Sammy
It’s a very frightening time when you get diagnosed, especially when it comes out of the blue, so I really feel for you. I had heard of MS but didn’t have a clue about the symptoms and I was devastated when they told me. I went through a really bad time but my symptoms improved with my first lot of steroids and now I’m on a Disease Modifying Drug (DMD), Gilenya (as is Tracey who has already commented). It seems to have stopped my relapses in their tracks. So although you’re having a terrible time at the moment, with the right help, things can get a lot better for you.
If you haven’t already, I would strongly recommend asking about a Specialist MS Nurse. They will be able to give you loads of advice and help with your symptoms. I’m able to contact mine whenever I need to and I can usually get an appointment within a few days. She has literally been a life saver.
Hope things get better soon.
JZ
Hi Sorry to hear about your dx. Everyone’s experience of ms is different because it can cover so many different symptoms, and you hopefully are unlikely to have all the things ms can throw at you. So this site is really good for sharing advice and seeking it, when something new arises, because usually someone knows exactly what you are going through. Usually what happens after dx depends on how bad your symptoms are. You will normally be under the guidance of a neurologist. For me, I am under the care of an ms nurse and no longer see my neurologist unless I have a bad relapse and my ms nurse feels I would benefit from seeing her. My ms nurse (for some their neurologist) co ordinates my care. If I need meds to help with symptoms I will ask her or if I need to be refered for physio or occupational therapy she will organise the referrals. In some areas the neurologist does this. It can take some time to get an appointment through but don’t leave to long before asking the hospital what happens next in your area if you don’t hear from them. With RRMS (relapsing remitting ms) usually your symptoms will ease or completely vanish until the next relapse which could vary from months to years depending on the individual. The time taken for symptoms to subside also varies from relapse to relapse depending on damage to the nerves. For example It took seven months for me to learn to write again (and still have sensory problems two years on) but only a few weeks for my eye problems to clear up altogether. For me I had a bad relapse two years ago and since then only a couple of minor ones. I still have some symptoms left over from my main relapse but life is still carrying on. I think you need to be kind to yourself and give yourself self time to come to terms to your news. You will probably go through many emotions and that is only natural. Hope that helps rather than worries you more. : ) Mish x
Oops sorry it took me so long to reply I have just found you have had some good advice already! : ) Mish x
Thank you so much everyone. I’m scared witless. They told me nothing. My eyesight came back really quickly but the hand written is really bad. Nothing feels normal. I was thinking it was the steroids doing everything to me and making me feel weird. Now with all your help I know it’s not. Going to try and find out the ms nurse as need answer. Stuck with not a penny and can’t go out to work. My world is falling apart big time. Don’t know if I can keep going with everything that has happened. X
Hi I know it is so scary when you first find out, and I can’t pretend it is fun but it will hopefully not be as bad as you first fear. It takes time to come to terms with things. I lost use of my right hand completely and couldn’t even sign my name…as I taught hand writing at school that wasn’t good! But…things did get better and although my hand still feels weird I can write again now! If you have not yet been given a follow up appointment contact your hospital to ask what next in terms of treatment or who you should contact if you have any more symptoms appear. Your GP is always a good contact point too but you should have a neurologist or ms nurse as well. Mish x
Hi Sorry to hear about ur dx I had my first attack the week after I left my husband it wasn’t fun I couldn’t walk, right, my speech was slurred and I couldn’t lift my right arm. My second major relapse I had double vision amongst other things That’s when I was diagnosed. I can wAlk again and drive just not as far as I would like my vision is back to normal and as miss said I can also write again I just sometimes put letters in the wrong order but that’s because I’m not concentrating and I know I’m doing it. Contact your citizens advice for help with benefits money etc
I was diganosed with ms on Wednesday and it is just starting to sink in. I have had 2 episodes with loss of vision and bad tremors in 6months. I know nothing about this condition and scared as I don’t know if there is something I should be doing, other than drinking gallons of tea. I am due back at the dr next week to start injections. I know nothing but have a feeling I’m going to learn. What should I be thinking??