I’m not really sure how to start this is very new for me, but out of any of this I’d like to at least make some friends and support any way I’ll try and keep a long story short, I have had a little symptoms for a while which docs put down to my other meds, so it started with quite a bad headache and feeling really tired, I’ve been quite unsteady on my feet for quite a while which again put down to meds, as my headache got bad I woke up one morning and the vision in my right eye was quite blurry and by 4 that day I could hardly see out of it, went to a&e she said it was a migraine later found out it wasn’t by the optician that I saw a couple days later he was concerned and I had an emergency app at hospital 2 days later they diagnosed me with optic neuritus to which I had an mri scan a couple wks later they said I have a couple lesions and lucky to be MS I waited a month to see the neurologist he then told me I have relapsing remitting ms and have 12 lesions in my head, I found this out maybe 5 wks ago, I have been trying to avoid talking about it but I’m struggling, and would like people to talk to make some friends and support.
I’m so sorry to hear of your problems but you have come to the right place.
There are some great people on here with good advice and most importantly a lot of people will understand. MS is so different for everyone and trying to explain that to non MSers is difficult.
You are certainly not alone and when you want to shout, scream, laugh, cry or just talk about anything then you can do it here. People will understand.
Your issues are similar to mine so as I say you are not alone. As time goes on you may want to look at DMD’s, possible pain relief etc. Of course your nurse and neuro will advise you but you can also get information on here.
All the best to you and remember ‘you are not alone’ xx
I know I’m glad I at least know what the issue is, I’m just a little scared I think I haven’t let myself think about it, which is probably the wrong way to go.
If you don’t mind me asking how was it for you when you found out?
I’m in Somerset and have only just had my first visit from the nurse etc, yeah I was told that the meets are a good thing and will help, chatting to people with the same condition which I will do, being able to chat on here is good as well. X
thanks that means a lot, I haven’t been able to tell anybody yet can’t seem to get the words out so hopefully speaking on here and make some friends will help.
that sounds very much like how I’m feeling I’m either laughing when there’s nothing to laugh about or getting really angry almost to the point of starting an argument and that’s not like me.
I’ve had my first nurse app she gave me some info to look at which I will, I’m hoping this site will be a good support and create friendships for me.
If you don’t mind me asking when did you find out you have this?
I was diagnosed in September of last year. I had 5 relapses before the final diagnosis. Rather a shock as it all started by dropping a cup of tea.
I’ve had both hips replaced and spine surgery so this just added to the problems but its so different and so frustrating. I’m in my mid forties, married and two teenage kids so not an ideal time to be struck down with this.
I have Tysabri infusions every 4 weeks which has reduced the number of relapses and I’m still working.
Shout if you need anything or just want to chat. Its hard talking to people who don’t quite understand and if one more person tells me ‘you look well’ I’ll scream.
Its your decision emz but personally when I’m having a bad day, my wife is at work and the kids at school its quite nice to have my spaniel, Harvey, keeping an eye on me and being my little friend xx
sorry it’s a bit late, wow 5 relapses that must have been quite scary for you, I’m early 30s my neuro says I’ve probably had it for a couple years with several relapses in between, I’m very unsteady on my feet needing to walk close to walls and had to get a new kettle one that I don’t have to pick up sounds silly I know but my wrists give way and I tremor quite a lot, I’ve been with my other half for a year this wkend so it’s still a learning curve for us both he is supportive but doesn’t understand it, I can’t deny I don’t either, that is the treatment they want me to go on, apparently you can feel a little crappy for a couple of days after it, it’s good to know that it’s helping you though, unfortunately I’m not able to work at the moment. I get asked that question by my other half and my mum worries a lot bless her but sometimes I simply don’t have an answer for them, my head is filled up with so many emotions I’m angry and wanna scream and chuck stuff, other times I want to cry but I won’t, and other times I just want to be quiet, aw that’s nice a spaniel Harvey is a cool name, mine is called bear, he is a cutie buy constantly at my feet I trip a lot around him, sometimes I need a bit of space. He is a strong little dog and over powers me ten fold. X x
Hi Emz x x your not alone in how you feel, I have been feeling very similar to you over the last 12 months. Last year and probably a little bit before that I had been feeling out of sorts, sore heads feeling really tired all the time then I started having numbness in lower back and legs and tingling in my right arm and feet. A minor bout of Bells palsy followed of which the palsy went quite quickly after few weeks but other symptoms remained and others appeared. I had an MRI last Autumn and these showed vascular lesions but neurologist was at that point not committing himself to any definite diagnosis. But as you can imagine alarm bells are already going of in my head. A follow up MRI was done in January this year on my back and neck and these show evidence of inflammatory myelitis and demyelination but still no definite explanation given at this point. So those results have prompted a Lumbar Puncture of which I had done this week along with some VEP tests and hopefully now I will get some answers from these results. So I am very much in the same boat as a lot of others displaying all the symptoms but not knowing if I have MS or not. Only my family and close friends know what I’m going through and I have yet to tell my work colleagues, though it is becoming increasingly difficult to hide the way I’m feeling day to day.
thanks for taking the time to msg me, it is I little scary people kept telling me I can do this that and everything else but all I could say was I really haven’t got the energy, I don’t know why they put it down to I can’t be bothered, I feel quite useless, if it wasn’t for the optician and getting me to hospital within a couple days I would be none the wiser, I hope you get some answers soon, mine took a few months which felt like a life time and you waiting as long as you have is very patient, my moods are slightly out there at the moment, I have been given all the leaflets etc but I can’t bring myself to look at them yet I just tried I turned a couple pages then put in down, the neurologist wants to get me started on treatment as quickly as possible which I understand it’s just so nerve wracking for me, I suffer from depression and anxiety, my family know but no one else yet, just not ready for that, it might make it easier for me to accept to tell the closest people to me but I’m a very private person, and at the moment rather talk to people that understand. How are you coping with it all. X x
Don’t know if it helps and I know you are going through tough times and are private people but I found that telling people of my MS helped. You may be surprised how many people know people or who have someone in their family who have MS.
Since my diagnosis I now have a group of friends who all have MS, some having the same DMD as me and all understand what you are going through.
Its your choice but it helped me to tell people xx
Hey Emz xx thanks for the quick reply. I’m of the same thought it’s a lot to take in and it makes it even more frustrating that there are no definite answers to any of my questions and tests and appointments and results take forever which adds to the frustration. It’s put a massive strain on not only myself but my family as well. My children are to young to understand and they just think Daddies grumpy which of course is just not me. Iv pretty much alienated myself from my closest friends as I’m unable to do the things I used to enjoy on a regular basis as I no longer have the energy to participate in any of the things I used to do. Days out with the family are short lived due to fatigue again. My work have been very good with letting me attend appointments and only management are aware of the seriousness of my symptoms as yet. Ive been over 12 months now without a definite diagnosis and the longer it takes the more worried I get. Hopefully the results from my LP will finally reveal some answers.
Hi Pops thanks for the support its greatly appreciated. I’m preparing to tell my work colleagues as most of them know I was having a LP this week as it fell on my birthday of all days but there was no changing the date as it meant I would’ve of waited months again for an appointment. I know myself I’ll feel better once I tell people that potentially I may have MS.
I picked up on what you said about mood swings, laughing or getting angry without any apparent reason. This is something quite common with us and one of the least understood symptoms.
My wife has had to put up with a lot of my temper tantrums which, as we are together 24 hours a day, means she gets the full force of my frustration every time. I say ‘frustration’ but no one knows if this is just a feeling of being pissed off or a bio-electrical event in a damaged brain. Either way I have to do a lot apologising.
As long as you can recognise it at the time it can help control your outbursts. As well as antidepressants I also use meditation and Tai Chi for emotional balance and ‘mindfulness’. And if your partner understands it’s the disease making you blow and nothing to do with your relationship, that will also help.
Pops is spot on; this is the place where there’s always someone who’ll have experienced what you’re going through and will understand. This forum is the best thing to happen to me since my diagnosis.
I’m 60, was diagnosed six years ago with PPMS and I live in Epsom. My first symptom was optic neuritis. I went blind in one eye and it took about nine months to get better. I dip into the forum most days so I’ll be looking out for you!
Kevin it sucks that it’s landed on your birthday but at least you’ll know, it felt a little scary the day the nurse at hospital told me it’s likely that I have MS that day I was heading to London for valley day so that was a bit of a clanger, she said I’d probably have to have a LP but when I seen my neuro he said as there are quite a few lesions and my bloods came back that I didn’t need one. My mum is so nervous for me coming to my house and helping out bless her, my family are putting up with so much from me at the moment I don’t realise when I’m being nasty etc but they don’t try and fight me with me back which I appreciate but they shouldn’t have to put up with it. x x
Pops,
It would be nice to have friends that are also going through this it makes it a little easier to talk to about life, I found a page on facebook but as it’s public I’m not ready to put myself out there that much I’d be more comfy having a group chat and 1 to 1s. x x
Albrecht Durer,
Thanks for the msg, I don’t realise I’m doing it til half way through or I get picked up on it then I have to rethink everything I’ve said and realise that I didn’t have to be like that, I haven’t really given myself a chance to let it in when I do I will read my leaflets that I’ve been given to try and understand. My other half has just swapped jobs so he is having to re adjust to that and my health, but he is very understanding of me when he sees me struggling then he’ll step in. x x
My MS nurse came to my house shortly after diagnosis and sat down with me, my wife and kids and explained to everyone what MS is and how it may affect me. She answered any questions we had. I’m not saying my family completely understand what I am going through or my different emotions on a day by day but at least they are a little more knowledgeable now and perhaps have a better insight into what the future may bring.
Maybe your MS nurse could help you and your family xx
5 days on from my LP I can honestly say it was the worst experience of my life. My lower back looks like it’s been used as a pin cushion. 3 lots of anaesthetic and 3 attempts with the lumbar needle whilst hitting a nerve on 3 occasions it felt like I had been electrocuted. I realise that this isn’t always the case and it usually goes trouble free but I wasn’t so lucky. I now have the headache from hell still and I’m just hoping something good comes out of the results as it’s definitely something i wouldn’t want to go through again.
ah that’s good it’s good that your family were there with you, my nurse came over a couple weeks after my diagnosis it was only me here to speak to her so had to reiterate everything, I tried to remember everything I wanted to ask and what people wanted to know, she gave me my blood results and I have the JC virus but still going to have the treatment when I have to go to hospital once a month, she also thinks it’s a good idea if they can get someone to come out and safe guard the house and get someone to come out and give me some help, but she gave me her number so she can come out again and talk to my family etc which was nice of her as it was a bit of a way for her to come. X x
wow you have a LP 5 days ago, oh my days it’s sounds quite traumatic and given you side affects ie headache, I’m sorry you went through that, I cant believe it took them 3 attempts and the anaesthetic sounds like it didn’t help, hopefully you’ll have some news soon fingers crossed. X x