Recent diagnosis feels so overwhelming - I dont know where to start.

Welcome and introductions
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Hi everyone. I am so happy to have found this forum. The last few months have been quite lonely and isolating. Outside of the handful of people I have told, I am keeping my MS to myself. I was diagnosed with MS in August 2022 after two years of tests and appts with a Retinal specialist. An MRI uncovered lesions, I was recommended to a fantastic neurologist (I feel very lucky here), diagnosed and quickly began taking Vumerity.

I am so confused by what is happening. Where to look and what questions to ask. I feel overwhelmed and very isolated. I have a 6 yr old and not knowing what awaits me on my MS journey breaks my heart for her. And for me too. The diagnosis was a relief at first because now I know and was able to begin treatment. But now what?!

I’m confused about how to navigate this. The endless appointments and phone calls with Dr’s, Nurses, pharmacies, insurance and even the manufacturer of my medication makes me dizzy. Sometimes I don’t want to be a patient, I just want to be me again. Although…I don’t know what that is at the moment.

Recently I have been unable to keep things in my hands. They shake and I have to overthink things whilst doing them so I don’t drop something. But I drop everything. I fell so frustrated. But also scared. I have had a few days completely lost to dizziness and weird bouts of nausea. And I am experiencing the most unusual thing. I gag uncontrollably…especially when I am upset. Its so unusual, unsettling and gross. I haven’t gagged this much since I was pregnant. Which at the time I assumed was normal, now I think the stress of the pregnancy was causing the gagging.

What can this mean I wonder. I’m going in for another MRI. I don’t know if I am having a flare, stressing myself out or worse imagining it all. Could MS be rebranded as MF as it is a complete and TOTAL MINDF*CK. Please excuse the vulgarity.

Sometimes I am so tired I feel like I could weep. And sometimes I do just that. The one positive about this is (and that has always been my attitude: Find that silver lining and work from there). So the positive take away here is that I’m a little more forgiving of myself about being tired, emotional or clumsy. Sometimes I’m straight up pissed about it all and I let myself be there for a minute.

After the initial flurry of hugs from those I did tell, I have been very quick to minimize things for people. I don’t want to seem sick or be a burden. I even feel unable to share any of this with my partner. (That is a whole separate discussion). But I am happy to have found this forum. We all experience different things so it is hard to know what is exactly happening with me, but I’m hoping that hearing your stories and possibly sharing mine will take the isolation out of this damn thing.

Thank you!

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Hi there and welcome to a club no-one really wants to join!

Firstly can I say …calm down…hope you’re not offended by that, but having having had PPMS for 25 years, I really do know how scared you feel.

I did smile when I read your MF idea…appropriate!

I cant use my hands very well…so this will be sorter than I’d like.

Take a deep breath, let your doctors do their job.

MS isnt a death sentence. We all have to find our way to live with it.

Jesus helps me…every day.

PM me if you wish.
love Boudsxx

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I sometimes think that having MS is just like life, only more so. In terms of the uncertainties, in particular. Or that is my personal view from 20+ years in.

When we’re young, if we’ve been lucky and nothing too bad has happened to us yet, and we live in a part of the world blessed with peace and relative prosperity, we can feel as if all is secure and we can expect life to spool out into a generally sunny future. Sure, there’ll be ups and downs, but probably nothing to shake our foundations, or not for decades at least. And then along comes a life-changing dx and bang goes that pleasing illusion. An illusion is all it ever was, of course, but it is saddening and destabilising to see it go. Plus it’s not damn fair, and all that. And our contemporaries are getting on with their plain-sailing lives as if nothing had happened, dammit. And even our nearest and dearest have their own troubles to deal with in coming to terms with our dx and maybe feel helpless, leaving us feeling unsupported. And somehow we have to navigate a future that feels full of fear and doubt. It’s a lot to deal with. No wonder you feel low. It’s all so long ago that I can’t remember how long I was a total mess at the start, but it wasn’t a short time. I’ve been a mess plenty of times since too, and will be again, but in between there have been plenty of good times, and experience has given me confidence that they will come again, even when the going is tough. Most of us manage to carve out a good life for ourselves. But it can be hard to see a way through, when the shock of dx and its implications are still new. Please give yourself time and be patient. You will not keep feeling this bad, I promise.

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