Hi there- this is my first post and time using the forum. I am very newly diagnosed after a case of optical neuritis which left me with temporary blurred vision. I was in hospital for four days and underwent all manner of tests when they decided the lesions on my brain were likely to be MS. I was sent home with a course of steroids and an appointment in 3 months time to assess whether the lesions have progressed or have stayed the same which is when I assume they will tell me what form of MS I have. Before diagnosis other than feeling tired and suffering with headaches (things I just thought were caused by my busy job and long days) I was of full health and fitness and very rarely suffered with aches and pains (I’m only 23 yo). However since my diagnosis two weeks ago I feel my body has gone into over drive, my knee is extremely uncomfortable to the point where I need to wear a brace for it to be manageable, my scalp constantly feels like my hair bobbles are pulled far too tight to my head even when I don’t have any in and my shoulder is really painful especially when I wake up in the morning. I hate talking to people about how I’m feeling because I don’t want them to think I’m over worrying and just seeing problems that aren’t there but is this influx of symptoms something that others have experienced? It’s as if one moment everything was normal and now suddenly everything is wrong with me and I’m not sure what to take seriously or what to ignore. I am yet to have an appointment through with my MS Nurse and have an appointment with my GP next week so will discuss my symptoms with him but some reassurance is needed (and a big fat hug) x
you poor love.
yes it’s the bloody ms playing these tricks on you.
however once you start to fight it back with a DMD, you will be in a better place.
ask if you can be referred to a neurological physio who will be able to help with your knee problem.
with your busy job and long days you will find it difficult to get enough rest.
Access to Work can offer excellent support eg taxis to and from work.
also your employer is legally obliged to make some changes to help you do your job.
maybe a change to your hours, option to work from home, regular breaks etc
so along with the big fat hug i’m sending, i hope you can see the light at the end of the tunnel.
Hi, it sounds like you could be having a flare up or relapse. If that is the case, then DMDs could be the thing you need to help reduce attacks and disability.
It`s all still very new to you and you need time to absorb and get your head round it all.
Be kind to yourself, you dont have to explain yourself to all and sundry.
Make sure you get good quality rest time.
It will get better.
Look at the info that you can get sent available on this web sight. I have only been diagnosed this month and it has helped
me. It is very helpful to understand ms symptoms. The info does not just describe symptoms but explains the whys, as far as
it can. I know I have assorts of different fears going through my head. What I hold onto was after telling me I had ms the
neurologist said, ’ if I was telling you this even 10 years ago, it would be a reason to be scared, But with treatments available
now, it’s not.
I think diagnosis of MS is bound to be a shock to your system. So your brain is now gone into ‘Oh my god, I’ve got MS’ mode and everything you feel is filtered through that information. This could mean that stress of the diagnosis is causing your body to react accordingly, and these physical symptoms will ebb away as you get your head round the diagnosis. Or you could be having a full fledged relapse. And as you’ve just had steroids, it’s not likely that you’d be given any more just now.
As you have a GP appointment, run through all these physical things with him/her and see what the MS nurse thinks too. Meanwhile, its a case of making sure you rest enough, try to avoid stress (I know, that’s impossible, you’ve just been diagnosed with MS and that on its own is enough stress!). Talk to your friends and family about how you feel. Obviously you don’t want everything to be about this new diagnosis, but people who love you will forgive a bit of one tracked mind.
And obviously, we are always here to help with questions and thoughts. Together with virtual hugs.
Thanks so much for your lovely reply. I am so ready to start the medication now because I’m just an over thinker about absolutely everything at the moment, hopefully being on it will give me a little peace of mind that things aren’t deteriorating as quickly as I am imagining them to. I went back to work for the first time yesterday and they were wonderfully helpful and have shitted my working hours so that my days aren’t so long so I already feel much happier about that. I’ll remember about Access to Work for if I need to make other changes in the further, thank you! Xxx
Hi Boudica, thank you for your response! I think that’s what’s the hardest part for me is just the unknown and lack of answers /information but I suppose you get used to that after a while. I am ready to start taking the DMD now because I think it’ll give me some peace of mind that I’m not going to completely deteriorate in the space of a month ha! I don’t have an appointment with my Neurologist until September so hopefully then we’ll start looking at them xxxx
Hi Sarah thanks for your reply. This website has been truly wonderful and so helpful. I used the helpline when I was first dismissed from hospital and the information he gave was second to None. I’m sorry to hear about your diagnosis, you sound extremely positive for only a month on which is definitely the right attitude to have. I agree definitely and for me it was the best diagnosis out of a terrifying bunch of possibilities so it’s reliving to know there are treatments and stuff to manage it! Xxx
Hi Sue, thanks so much for your lovely message. That’s what’s difficult for me knowing what is or could be MS related and what’s in my head but I’m sure as time goes on it’ll get much easier to know what to dismiss as general aches and pains and what to be mindful of. My mum has been saying that every time I say about my knee ‘you’ve just had steriods so if it was a relapse then they can’t give you anything more so just rest it’ so I suppose that’s a good mentality to have! My GP appointment is tomorrow so looking forwards to getting things off my chest and seeing what he suggests! Thanks for your lovely advice it’s invaluable to speak to people who really know what they’re talking about and understand all the other little bits that come with the diagnosis xxx
Crossing legs !! I read it somewhere on here, someone said crossing your legs could cause knee probes. My knee was so painful that my normal 30 min dog walk took over an hour & getting up & down stairs was a real prob ! As I read it I have stopped my self crossing my legs and first it improved & now my knee works as normal
Yeah thats exactly what my Dr said because as I was complaining about my sore knee I had my legs crossed! I haven’t been doing it half as much when I’m sat down and it has improved massively, it’s so tempting though because I find it much more comfortable! Hopefully it’ll become second nature soon to not do it. Glad your knee has improved as well! It’s amazing all these little things you can attribute to MS when really its just your normal body aches and pains xxx
Welcome to this forum, it is a life saver. Everyone responds when you have a question.
MS is a roller coaster for sure but a journey that you can share with others.
My neurologist said that my repetitive and deep, new, pain in my knees and shoulders could be heightened by MS. I tend to sit in the same position for hours with my iPad… now, I have found new hobbies and the days of just screening are over. My shoulders are improved. Good luck x patience
Hi, this is my first post in this or any other forum! Just really looking for some advice or other peoples experiences really. I hop that’s OK. Almost 3 years ago in November 2014 I had an episode which was eventually diagnosed as CIS. I lost feeling in my right leg (but not strength) and kind of dragged it behind me for a couple of weeks. Unbelievably I thought it was funny at the time After about three weeks, I’d returned to normal and wasn’t even going to go for the MRI as I was totally fine. My original appointment was with a neurosurgeon who very bluntly told me that the most likely cause was MS. I was own my own, went to pieces and somehow managed to get home. I then saw a neurologist who specialised in MS who ordered a further brain MRI. When I went back (with my husband this time), he said that the MRI was ‘borderline’ normal and was not symptomatic of MS. (I suffered from severe migraine as a child and young adult but he didnt ask about this). I have one lesion on my spinal cord. Anyway basically he said go away and live your life. This was echoed by my GP. I was offered a lumbar tap but my GP helped me to decide against this (given the circumstances). To date, I’ve had no other motor issues or any other ‘typical’ MS symptoms but I’ve suffered from a number of other non-specific things (slight intermittent lightheadedness, some indigestion, one episode of vertigo). I have worried myself sick about this (that’s my personality) and have developed body hypersensitivity. Basically, I think that everything is MS. I am working with a psychologist how has diagnosed that I suffer from anxiety which of course has very similar symptoms to those I’ve described. I’m also peri-menopausal (sorry I should have said I’m 47) so there’s loads going on. Anyway I’m terrified. It’s like its always there. I’m generally fine when I’m busy but when I’m quite I just panic and it’s really bad when I go to bed so I don’t sleep and that makes it worse! So my question is this, does this sound normal? Should I go and see the neuro again or do I need to get a grip? I appreciate that I’m really lucky so apologies if this sounds very love me love me. Thanks in advance x
No minute of working to address your anxiety will be wasted, whether you turn out to have something chronic neurological going on or whether you don’t, so that’s all good. Does your GP know how much trouble you are in, trying to manage your anxiety? Don’t be embarrassed about it - it’s a real thing and can cast a long shadow over a person’s life. If the psychologist and the GP are working together to help you, then great. If the aren’t, then I think they should be.
If you’re anything like me, you will know that, when your head’s in the right place, you can cope with most things; when it isn’t you can cope with nothing.
By the way, your post is tacked to the end of another thread. So that more people are likely to see it, you might like to repost as a new discussion.
Lesley, the people on here are lovely and some very knologable, but unless there is a hidden one (some of the posts are so informed I do wonder sometimes) they are not a neurologist. What I would say, is that if the q of is it ms or not is taking over your feelings, push with your gp that you need answers.
From what have learnt over the last few months is that if you are lucky enough (I imagine you don’t feel lucky right now). To have no ‘major’ symptoms you may struggle to get a diagnosis right now.
‘Get a grip’. As you say is not real, bottom line you sound scared. Scared if you think you may have ms, or have been told you have is scary . That’s not strange or wrong.
all the very best, hugs
I was diagnosed with CIS about 3 weeks ago. At the time I had been having spasms in the left sde of my face and travelling down to my left arm. I was experiencing these 'attack’s every day for around 4 weeks which would leave me unable to talk or use my left arm.Initially I was told that I was having a stroke/TIA but CT scans came back clear. I was then referred to the neurologist.The neurologist has confirmed that from my MRI scan I have multiple lesions in the brain and also on the spinal cord. At this time he has advised that I am at high risk of developing MS and have been referred to the neuro team for support.
I am 33 and to be honest I am in complete shock! I never expected this and to be told that I may go on to develop MS is something that never crossed my mind. I genuinely believed that I was just having an ‘episode’.
I have suffered with terrible fatigue, migraines, bowel problems for many years and put this down to my under active thyroid (my thyroid has always been blamed for everything!) it now appears that these symptoms may have indeed been an indicator of MS??!!
Just as I am starting to get my head around everything the last week I have now been experiencing the most strangest of feelings. Apart from the fatigue taking a hold of me I am having blurred vision and have the most horrible feeling that I cannot get my breath properly and that I cannot gain my balance. As well as this I am having somewhat shooting pains down my back which are really painful.
I feel so lost and don’t know whether this is just all in my head or I should contact the neuro team. I do not want to waste anybody’s time but I am an emotional and physical mess.
Any advice welcomed.
You poor thing! It’s so scary, some people on here were diagnosed and it was a massive relief because they’ve always thought it could have been that, but like you I had absolutely no idea this would be the outcome. But also like you this was the best thing they could have told me because they were scanning for tumours and cancers and all other scary things so every day I count myself lucky that I have something really manageable.
I’m no MS expert yet (I’ve only been diagnosed for just over a month) but I had the exact same experience where I didn’t really notice any problems before but now I notice every single ache and pain. It’s worth getting in to contact with your GP/Neurologist/MS Nurse to let them know of the changes you are having because it might be a case of getting you back in for another MRI scan to see whether it’s progressing or staying the same and hopefully they’ll be able to give you a proper diagnosis then because it must be awful knowing you probably do have it but not having any certainty.
The best advice I could give you is you are not alone. I think we all have been through those emotions at one stage or another. All my team are so supportive and reassuring, nothing is ever too much for them. Your team deal with people like us on an hourly basis and they know how daunting and scary it is so they will not think you’re ever wasting their time. Your health is the most important so if you ever feel like there’s a change you need to look into it.
If you ever need to speak to someone about it please feel free to drop me a message at any time xx
Thank you for getting back to me. It is being in ‘limbo’ I find the worst part at the moment. I have chosen not to tell my family (my partner does know) as I feel somewhat a fraud saying I have CIS and it may turn into MS but I don’t know!
I decided to contact my MS nurse as my symptoms are still persisting. He is coming out to see me tomorrow so I am hoping to know a bit more then and ask some questions that I have.
I should not complain, as you said it could of been so much worse.
Thank you so much it’s so nice to see that there is support out there. xx