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Newly diagnosed..feeling lost

Hi I did try to post last night but I don’t think it worked, apologies if it did and I’ve double posted.

I had my MS diagnosis about 2 weeks ago, after over a month of hospital stays due to a relapse. At the time of course, no one knew it was a relapse as the MS was undiagnosed. My close family know of course, and I have told my boss who was so understanding. I have read lots of advice which is usually along the lines of ‘you don’t have to tell anyone, you decide who you tell’ etc, however I’m very aware that I’ve been distancing myself from my friends and colleagues, who all knew I was in hospital, and I now feel a bit stuck. I’m really not ready to open up about it yet

I’m now feeling pretty well, bar some numbness & concentration issues. I have reached the point where I’m avoiding socialising because of all the (well meaning) questions from friends who I know are worried about me

I’m guessing this is common, but I feel daft asking for advice. I’m usually so sociable and (cliché) ‘bubbly’ but feel like I’m slowly isolating myself I’m 28 and have never dealt with any health issue before

Hope this all makes sense (I’m on gabapentin and it does make me babble!!)

Amy x

Aw poor you Amy.

You’re young to get a diagnosis of MS. I assume that you were given steroids in hospital which is why your symptoms have remitted. That means (assuming I’m right) that you have relapsing remitting MS. Which means your next steps are to meet with an MS nurse and also to choose a disease modifying drug (DMD). Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This will at least give some familiarity with the various options for DMDs. Obviously not every drug will be available, some of the conditions for DMDs are related to your variety of MS, and some will depend on your neurologists preference and what they are able to provide support for locally.

I’m sure you’re living in a mess of emotions and fears about the future. And there’s not a massive amount that anyone can say to affect that, except to say that at least today there are so many DMDs and they are much more effective at reducing relapses now than they used to be.

And of course you have all of us as a community who will do our damndest to help you though your worries, concerns, symptoms and decisions.

Sue

Hi Sue, thanks so much for your message. I feel better just having got that load off my chest!

Having read up on a few people’s stories, I’ve realised just how quickly I went from symptoms to diagnosis and how lucky (?!) I am to have not had the huge wait. Looking back, I’ve had symptoms for a good few years but always put them down to other stuff, but this all started when I went totally numb overnight & ended up admitted to hospital. I was in for nearly 3 weeks, MRI and LP done and then my diagnosis came about 2 weeks after that. So it’s been a whirlwind. It really did come out of the blue

Yea they have said relapsing remitting.I had a 5 day oral steroid course when I was discharged (the steroids had an awful effect on me - I basically don’t remember a whole week!) and then I went straight on to gabapentin. My numbness has got soooo much better (although still affecting my hands, arms and chest) but unsure whether it’s the steroids or the gabapentin that’s helped. The disease modifying drugs, I will be able to discuss at my first MS nurse appt in 10 days.

Thank you again for your message & I’m comforted to know what a caring community there is on here hopefully I can also provide the same when I’m past ‘newbie’ status and know a bit more!

Amy x

Hi Amy, just picking up on telling people - if you drive you do need to advise the DVLA of your dx.

Plus your motor insurance provider, and if you have a mortgage protector insurance policy (or some life ins policies) it’s best to tell them too.

Other people, just tell them as much or as little as you’re comfortable with. Most people will have heard of MS but not be familiar with exactly what it entails. Some will want to know more, some won’t. The annoying ones will tell you what they think it entails without any knowledge at all. You’ll get all sorts.

You’re dx is still very recent so allow yourself to get used to it and find out more, otherwise you tend to believe whatever is said to you and that can be scary.

We’re all different - I had trouble not telling everyone I came into contact with, from family to friends to colleagues and even strangers at the supermarket! In the early days before I knew anything much, for some I’d just tell them I had been diagnosed with an autoimmune condition which affected my central nervous system, and leave it at that.

I use this forum to gather as much info as I can, and the MSTrust website, and, for info on DMD’s the MSDecisions website is great.

Don’t Google anything, take each day as it comes, keep a diary of symptoms - what, when, severity, duration etc as that can be helpful at neuro appointments when your mind goes blank.

It takes time to accept the dx, so be kind to yourself. Your MS nurse appointment will be informative but you may forget what was said, so if you are able to take someone with you it may be worth doing that. If not, take notes.

Good luck, we’re here when you need us.

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Ang’s advice is excellent. Treat yourself kindly and tell people as much or as little as you are comfortable with.

She also said avoid Google. An exception to that is the really reputable websites. So information from the MS Society or the MS Trust are both reliable as is http://multiple-sclerosis-research.blogspot.com/ This forum is full of people who will share their experience, you might also find that https://shift.ms/ is another forum with many younger people (I’m not saying that we’re all middle aged on here, but …)!

Often people will share their experience with diet and alternative therapies. Some of these are good (for example, taking a supplement of high dose vitamin D is a good idea, but get your levels measured to make sure you’re not overdosing on it). Some people will also recommend avoiding ‘big pharma’ and going down an untested and unregulated route. What you end up doing is of course your choice, but try to do as much homework on any treatment method you try out.

The other bit of useful advice is something I wish I’d had from the start, is to exercise. Try to get as fit as you are able, especially your core muscles. It will pay dividends later on.

Sue

Thanks both so much for your replies. Yes have informed the DVLA and waiting on assessment results, my insurers are also aware of this. There’s so much to take in isn’t there :frowning:

Definitely going to start keeping a diary that’s an excellent idea. I’ve now told a few of my close friends, who have been very supportive and full of kind words. I hate the thought of people worrying about me - I end up worrying more about them than I do myself!

I’ll make sure I read up on these links and inform myself as much as I can. Thank you both again for your support & I hope you have a nice weekend xx

hi amy

just want to add my tuppence worth to the excellent replies you have had.

remember - you are still you.

make sure that you still do the things you love to do.

i’d always loved live music so when i got my diagnosis i went on a mad spending spree buying tickets for gigs.

i love being able to get a carer’s ticket and so be able to invite a friend who can go free.

these days i get too knackered so haven’t been buying any recently.

however when it’s hubby’s birthday or if hawkwind are touring, then spend i will.

try your best to stay upbeat.

love carole x