New diagnosis... New life

New diagnosis and before diagnosis
1

Hello,

I have recently been diagnosed with MS (Relapsing Remitting) and in all honesty it is the worst thing I have been through in my life so far - and I like to think I am relatively strong.

It all started for me in November 2015 where I had complete right sided numbness, after being passed from pillar to post I went private and saw the loveliest Consultant. I had an MRI and they found a lesion so they called it a Clinically Isolate Incident and I went on my way - unbeknown to be what this was the start of.

Then in May-June 2016 I moved house, relocated and got engaged - everything was going a bit too well for me. I then started to experience vision problems along with left sided numbness so I phoned my GP as it scared me, I thought I was going blind. She said she thought it was to do with my ‘neurological issues’ and to see an optician and then my consultant, which I did.

My optician confirmed that my optic nerve was inflamed and this was probably a job for my consultant, so I did the usual stupid thing of Googling and guess what I found? The dreaded MS. I contacted my consultant in a panic and she told me to come in again, she did some basic eye test and asked a lot of questions and said there is a possibility of MS… I cried A LOT, unusual for me I am not an emotional person especially in front of others. I had another MRI done and they found lesions on my brain that an the combination of my blood test results confirmed I had MS.

Currently I am waiting for my first appointment with the MS Nurses, and my new consultant (who only works in the NHS not privately) my consultant referred me onto him as apparently he is a ‘guru’ in MS and the best person you can hope to see, so I have gone with it.

This has been the toughest few months of my life and I do at the minute feel like I have changed as a person - which sucks.

My family, friends, colleagues and Fiance are all so so supportive and I couldn’t ask for a better bunch of people to be around me helping. However, I have felt recently like nobody understands…

If your leg falls off, people can see it, they get it, they know what sympathy and support to give you. Unfortunately I have been diagnosed with something that doesn’t have an awful lot of certainty so it is hard for people to know what to say or what to do, I get that.

I have, at times, felt really isolated…I think it is fair to say it is an isolating disease. Everyone listens, offers supporting words and is so so so kind but there is just that small part of me that knows they don’t quite understand…I have had a lot of “It could be worse” “At least you know what it is” “Joe Bloggs has MS and they still run marathons” which at first helped then after a while made me angry. I don’t care what could be worse, I don’t care about Joe Bloggs and I CERTAINLY don’t care about running a marathon. Selfish and mean I know but you can’t help how you feel. Don’t get me wrong there definitely are much worse things in the world to happen to someone, but for me, this is the worst thing that has happened to me yet.

One thing I have definitely learnt is you have to let yourself feel what you want to feel. If you feel upset, let yourself be. If you feel angry with the world, be angry with the world. Holding back feelings definitely does not and will not help, it just prolongs you coming to terms with it and owning it.

The last few weeks I have felt a bit more positive, which made me feel guilty for not moping about this hateful thing - so you can never win!

Now I have received my appointments through it has hit home a bit more, like this is real, this is my life now. Which has caused me to have a few wobbles, but I am definitely feeling stronger than I was.

One irritating thing I have noticed with the vision problems is that exercising makes it temporarily and quickly a lot worse, until I cool down / until my heart rate goes down… that sucks… and makes you feel really stupid… but I will learn to deal with it.

I guess, long story short, I am here to share my experience so far (in the hope it might help someone else) and also to vent to people that understand a bit more, and people that won’t feel awkward when you do vent. It has taken me a long time to even look on the Internet for a forum or anything to do with MS because I was scared about what I might find, and even today I read something and it freaked me out and I shut the Website down - this is all things I have to do to learn about my diagnosis and know what to expect or not to expect.

:slight_smile:

2

Hi Izzy

I think a new diagnosis of MS entitles you to some very changeable emotions. A bit of severe rage at the sheer bad luck at getting a crappy disease is definitely called for.

By all means have a good rant on here, it often helps. And whichever way you look at it, having MS stinks.

But, at least now you’ve been diagnosed, you can get some decent drugs. Meeting with your MS nurse and NHS neurologist (and you are fortunate that you straight away get to see an MS specialist) means you will soon be asked to start looking at disease modifying drugs (DMDs). So if you feel up to it, you could start looking at before your appointments. There’s a whole load of publications on the MS Trust website, one of which is their decision aid: MS Decisions aid | MS Trust The point of DMDs is to reduce the number and severity of relapses. There are now a whole load of options for DMDs so hopefully, you can get started on a good one and may not ever have any disabling relapses.

And, while it may feel like someone has taken your life and wrecked it; with some drugs, maybe physiotherapy, maybe some small changes to your life, you will soon feel like it’s a minor derailment not a major catastrophe.

Don’t concentrate on the worst possible outcomes, ignore the experiences of people like me who’ve had MS for years, mostly without the benefit of DMDs; and work on getting your life back where you want it to be.

Sue

3

hi izzy

sue is right.

there are far worse diseases out there.

i felt more in control when i started my first DMD.

managing the fatigue is the hardest.

i used to carry on beyond tiredness but now if i do that it means the next few days are for rest.

your ms nurse is the most valuable person you will meet.

i’m going to quote Tanya Downes, bless her, CUTO (Chin Up Tits Out).

a positive mindset will help you deal with it all.

carole x

ps if CUTO doesn’t work for you, try F.I.S.H. (F*ck It Shit Happens)

4

Hi Sue and Carole

Thank you for your comments, it is positive to hear about the medication / therapies on offer that you both feel and beneficial I will definitely look at them.

I am a lot more positive than I first worse, I guess for me at the minute it is the fear that it could get worse, or become physically debilitating and that I won’t be able to carry on with my life as normal - for me or my family.

I think that is why I have steered clear of the Internet, for fear of reading something that I don’t want to read and assuming that will necessarily happen to me too. I know it isn;t the case and I know majority of people live a perfectly “normal” life with this thing.

Tiredness is definitely something that is affecting me at the minute, especially in the week when I am at work - which sucks because I guess sometimes it comes across to others as laziness because they don’t understand. I am definitely someone that needs to learn when to say stop and have some me time to relax and recuperate.

I am 100% looking forward to meeting the nurses now, getting my questions answered where possible and having a good support network, at the minute you feel a bit in limbo like you have this thing but don’t know a thing about it.

Thank you for the information!

Izzy x

5

Izzy- your comment about tiredness 100% resonates with me! I was diagnosed in March and though i still work full time, it feels like a bit of a battle at times, and i sleep A LOT at weekends- during the week its literally get up, go to work, be at work, come home, go to bed. repeat x 5, i really dont feel my work collegues appreciate how tough it is just to get through the week, especially when we are so busy. On one hand, i dont want to be treated differently/felt sorry for- on the other, a full weeks work feels a bit like a marathon!

I have definitely re-evaluated my life a bit since diagnosis- i think its only now iv had my first DMT (i opted for Lemtrada and am 6 weeks post round 1) that its starting to sink in- just part of lifes journey!

6

I think what both of you are describing as ‘tiredness’ could more accurately be described as MS ‘fatigue’. Have a look at the MS Trust factsheet on fatigue: Fatigue | MS Trust it’s more sort of bone deep than simple tiredness. And struggling to work full time whilst also experiencing fatigue is hard. It’s not impossible of course, you just need to work out how to conserve energy, do a bit of time / fatigue management, so that when you rest, you do completely rest. And try to cut tasks up both at home and at work into smaller nuggets of effort so you can manage to complete smaller chunks of work at a time.

There was a phrase used by a company I used to work for that I think I smirked at back then but it’s probably more useful now. It’s ‘work smarter not harder’.

Sue

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definitely makes sense Sue! I have over an hours commute each way aswell- i think i have just about realised that long term it isn’t sustainable or good for me (no way to use public transport either), but id rather take a pay cut, get a less stressful job closer to home, than make myself ill, potentially worse in the long term, and have to give up work early.

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Hi Izzy

S*it, innit!

I’ve been diagnosed since April, so it’s new to me as well. If it helps, your vision worsening after exercise sounds like Uhtoff’s phenomenon. It happens when you overheat and used to be used to diagnose MS in the old days. Mine gone better when my double vision resolved after about 6 months. This is the best place to be for support as we all know what the crap illness feels like and it’s the place to be to rant and rave!

Julia xx

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Julia - thank you for the encouragement on the vision thing I have been worried it will never go! So thank you.

Sunshinedays - I definitely agree about the working I am the same I do an hours commute and we are so busy at the minute it is unreal I have a lot of travel coming up with long days which I am dreading! I think I will need to explain to my work so they can either look at getting help at these events or at least understand but I know they will take it as an excuse to “not pull my weight” it is hard to know the best thing to do. I think a new job closer to home is the way forward, I am honestly looking forward to if I am lucky enough to have children so I can be on maternity leave which is ridiculous because that is exhausting too!

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hi izzy and sunshine days

if your commute is taking all the life out of you, contact Access to Work.

they can help with advice on all sorts of things.

most important they can arrange for taxis to and from work.

carole x

11

Hi Izzy,

reading your first post sounds like exactly how I’ve been feeling. I was diagnosed in January this yr with remitting relapsing after a 20 yr gap between episodes! Relatively unheard of from what I’ve been told so far. However I’m 12 months into this episode and numbness and cognitive issues are still the same. My GP has just started me on a course of B12 injections and this seems to have helped with my tiredness issues. I had a LP in May, which wasn’t anywhere as near as bad as I thought and I’m seeing the MS nurse next wk for the first time, I have so many questions! In the scheme of things I’m lucky as my symptoms are relatively benign, for me it’s the unknown that’s the hardest thing to cope with! I’ve just started reading posts on forums as have pretty much been in denial since my diagnosis and haven’t told many people, I guess that needs to change as I accept things more. Stay strong and positive. I know that’s easier said than done some days :slight_smile: x