Just Diagnosed

Hi, I’m Matt, and I was just diagnosed with Multiple Sclerosis. Five years ago I had optic neuritis, so I’ve known for a long time that MS was a possibility, but my scans at the time were really good, my eye healed very well, and I was discharged two years ago. Five years to the week this February I found myself thinking about my optic neuritis, and feeling this sense of relief that I’d made it five whole years without incident and hoping that it would remain a CIS, something to finally put behind me. It was that week that I felt my lower legs start to go numb and over the course of a few days that numbness spread up to my waist. I knew what it was immediately. I knew the thing I’ve been terrified of for the last five years of my life had finally happened, and right at the moment where I was starting to move on and let go of that fear. The numbness has receded over the last month and is now thankfully mostly only present in my feet. I received the results of my MRI on Thursday, my neurologist showed me two lesions in my spine and diagnosed me with MS. It feels completely surreal to be here exactly five years after it all started. I had this moment of relief lying in bed that week with my CIS on my mind where I thought to myself “It’s been five years, there’s a lower chance of anything happening now.” I’m not at all superstitious, but the moment I thought it I had this horrible feeling like I jinxed myself. It was the next day when I woke up that my feet were numb. I feel oddly calm, because in a lot of ways I feel like I’ve been waiting for this to happen for the last five years. Now I find myself waiting for the next thing to happen, and I’m scared of what that might be. I’m hoping I can make it another five years. Thank you for reading my story. I would love to hear from others about their experiences, and any words of wisdom you can offer me at this time as I adjust to this new way of being would be greatly appreciated.

Hi Matt

Pleased to meet you but sorry to meet you at the same time.

This forum has been a lifeline for those days when you need to talk to someone who understands.

You need to be kind to yourself, sleep around the clock if needed, if you normally have a tipple in the evening - this is not the time to stop!

Although you have been expecting it actually hearing it from a neurologist is a shock so consider yourself “in shock”.

Moving on, these boards are where you can meet lots of people who have gone/are going through the same thing.

Tell us a bit (or a lot) about yourself.

For example - my story is that I was diagnosed tin 2008 the week before my 50th birthday. At the time I was working full time as an advisory teacher supporting children with additional needs following the Disability Discrimination Act 1995.

MS gatecrashed my life a few years later and I was taking a lot of sick leave. Occupational Health got involved and I ended up taking early retirement on medical grounds.

I live with my husband who I have been with since being 21 and my 2 sons (aged 33 and 34). They keep me sane (most of the time) and drive me crazy some of the time!

My words of wisdom are to avoid stress as much as possible.

Keep active.

Have something meaningful to do.

Have something to look forward to.

Ask questions of us and we will reply. Ask about anything.

You will survive this beast you know.

Carole x

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There is so much that goes on beneath the surface of conscious thought. It seems to me likely that your system was, at some level, already well aware that there was trouble brewing, it’s just that the messages were not yet in a form that the mind could assimilate into conscious awareness. In other words, I don’t think you jinxed yourself: I think at a subconscious your body already ‘knew’, and that triggered the sinking feeling that your optimism was maybe misplaced, followed not long after by the clear physical evidence that MS was at work and you were relapsing.

I am sorry that you have had this bad news. It is a tough dx to get, and it seems particularly cruel that you thought, with good reason, and with the natural optimism that is part of a healthy mental state, that you were out of the woods. That optimism will have taken a battering for now. But please know that, with time, it is likely to reassert itself, as your natural resilience strengthens once more. You will not keep feeling a bad as you do now, and you will be OK. Hang on in there. You will make a good life for yourself despite MS, as most of us do.

Alison

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Thank you both of you <3 A little about myself: I’m a 25 year old poet from Southampton. Before the pandemic I used to work frequently with people with dementia and have conservations with them which I would record and turn into found poems as an art therapy opportunity, so they’d have something that captures some of their fondest memories. That’s probably the thing I’m most proud of. I’ve been performing poetry in one way or another for the last seven years (something I also started in February, which always seems to be a significant month for me!) I was just establishing myself as a freelancer when the pandemic hit, and unfortunately I’ve not really been up to much since aside from the odd thing. I live with my Mum who has had to shield for the last year due to her own conditions, as well as having asthma myself, so I’ve been living a quiet existence this past year already. My friends have thankfully been really wonderful during this time and are helping me to stay optimistic. They sent me a wonderful care package full of presents that by some miracle arrived on the day of my diagnosis and even raised money to help me out, which I was completely floored by. They got my address through my friend Christy, who grew up in Southampton, but not in my area just across the water that she’d never been to, (we met through poetry in London) and she got my address by suggesting we take a virtual walk around my neighborhood on Google Streetview to take my mind off things when I wasn’t doing well a few weeks ago, and I could show her my house, and I DID NOT SUSPECT A THING. So I’m very lucky to have strong support from my poetry pals around me right now. I’m so glad that most of what I’ve done the past few years performing and writing was finding community, because it really feels like it’s saving me this time around. I think that do for a little about myself! Sorry if it’s waffle-y!

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Hello Matt

Welcome to the forum. Y’know, the welcome that’s the least welcome imaginable!!

I’ve had MS for 24 years. It was my 30th birthday present. You know like the bad fairy godmother in Sleeping Beauty. Happy birthday heheheheh!!!

I wasn’t actually diagnosed then. It was 5 years later that I got the diagnosis. During that 5 years I had relapse after relapse. Optic neuritis twice, general weakness, dropping things, falling over. And sometimes I was even sober when I fell over!

I didn’t know at the age of 30 that I was being tested for MS. I definitely didn’t know that the neurologists were actually pretty certain then that it was MS. They didn’t tell me.

In retrospect I’ve been glad I had 5 years not knowing I had ‘IT’. I just thought I had weird things happen to me (like spasms, only I didn’t know that’s what they were). I took some scary risks with my job, I took on jobs that I’d have been too frightened of had I known. Instead of sticking to a nice comfy, safe job working for a local authority, I jumped headlong into a training and consultancy job. I said ‘yes sure, I could do that!’ when someone asked if I could write and deliver a 7 days training course. I had absolutely no experience of training, just a barrel load of confidence and decent knowledge.

I doubled my salary within a couple of years, worked all over the country and had a ball. Even though I was also living with some pretty sneaky mysterious symptoms of MS.

I met the man who I married at the age of 38. I’m still very lucky to have him.

I am very disabled by MS. A full time wheelchair user, I can’t walk at all. I had a colostomy nearly 4 years ago and have to use intermittent self catheterisation. I still have occasional relapses, even though I’m now counted as having progressive MS. I have made some great friends on this forum, never met any of them, but they’re friends.

My real life friends are pretty good too. I’m lucky with them. They understand I can’t do what I used to, and don’t treat me any differently to the way they always did, ie make fun of me, ask my opinion then tell me I’m full of bull…

You’ll find that there’s a ton of things you need to learn about MS. Don’t expect to know everything at the beginning, take your time and learn about your ‘new normal’. By all means ask us for our experience and opinions, but also use the resources of this forum (see the About MS button at the top of this page) and of the MS Trust (type a search word, eg ‘symptoms’, and ‘MS Trust’ into your browser). Try not to randomly Google, you’ll not know what information to trust and what not. In the process you could scare yourself silly.

Best of luck Matt

Sue

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Good friends are a blessing. I am glad that you have such good support around you. The Arts are a great solace and source of joy too, as I don’t need to tell you. I love poetry (as a reader, not a writer) and have recently been finding out more about the contemporary stuff rather than just the things that I have loved for years and used to write exam essays about in the distant past - and what a lot of good work is going on now!

A

x

Matt

I’d like to private message you and I hope you don’t mind.

I promise that I am not a freaky stalker type!

Carole x

Hi Matti

Hope your well in yourself ?

It’s a hard thing to come to terms with can’t imagine thinking that for five years - that’s a mind job.

For me was the opposite started to notice the iris in my left eye was closer to my nose than the right and tremor in my right arm went to gp they booked me into high st optician they said need to go to hospital optician. They said after very thorough test "nothing wrong with eye sight need to see an eye dr - eye dr said not a problem with eyes it’s a brain problem I don’t do brains.

Fast tracked to an admissions ward x ray then ct scan can see marks on your brain you need MRI scan able to see marks on brain more clearly you’ve got MS we’ll do lumber puncture on Monday (I’m in hospital now as an inpatient). Lumber puncture shows high protein in spinal fluid which is destroying coating round nerve endings it’s definitely MS.

So there you go everything as usual to being told you’ve got MS in around two weeks. I’m left with questionable balance, double vision which comes and goes, a significant tremor in my right arm/hand and a stutter which comes and goes.

You just got to get on with life.

Regards c

Carllaugh

Hi Matt

I’ve just posted my first post on here with pretty much the same story as yourself. I made it 4 years, not 5. My first was in late January 2017, my second in December 2020. First lesion was on the optic nerve - disruptive much! - and the latest were 2 lesions that made my right side go numb. Living with a diagnosis of CIS for 4 years meant that a little part of me believed I’d have RRMS one day but I squirreled that part away so it couldn’t be heard much. I didn’t tell work colleagues about the CIS diagnosis till late 2019 and a few more in 2020. Explaining it is hard, isn’t it? In some ways, the diagnosis has felt like both a relief and a bombshell: the other shoe finally dropped.

How is your fatigue? I’m 3 months after those 2 lesions and utterly exhausted. It seems to be getting worse or that I go through patches where it’s hard then it lifts only to come back again.

I’m sorry you’ve had this diagnosis. I’m sorry we’re all living with such an unpredictable and reckless disease. It feels like a drunk uncle has taken up residence in my immune system and is wreaking havoc. I’m glad you’ve got good friends. I too work in the Arts and you make friends for life. Keep your friends close. Take the help (I’m a bit crap at that bit) and be kind to yourself. Being an artist means you have the option of using your life and self in your art so, if it helps and is meaningful, I say go for it.

Sending you lots of good vibes

K x

Hi Matt. I too am just diagnosed but awaiting another scan. I am a writer of poetry and now my MS journal. I am still in shock. Was not expecting this especially when told I was too hold to have it. Thinking of you.