#uncertainty - Shift.ms

30 Sep 2018 12:23Last reply 30 Sep 2018 20:17

Uncertainty

So, I'm managing well on Tysabri, being completely symptom free. On the one hand - I appreciate every moment more and am very grateful that I feel "normal", and hope it will stay that way for a long time. On the other hand - there is this uncertainty, I lived with Ms symptoms for a couple of year...

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@Sultan_Bahsi

31 Dec 2019 08:31Last reply 3 Jan 2020 17:40

Uncertainty of ms

I wish we had exact cure for ms. It's too hard to live with idea of what's going to happen?

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@Amy_Feltham

29 Apr 2020 20:54Last reply 30 Apr 2020 20:28

Uncertainty/ hopelessness

I got diagnosed with MS about 5 years ago and at first I was really positive. Now I’m getting towards 30 and feel like I should be more grown up (!) but I worry about what my future looks like. I like to have a plan, and worry that my symptoms could get worse and the rug will be pulled from under me...

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@millar

16 Jul 2019 14:11Last reply 17 Jul 2019 13:36

Managing Uncertainty

Hi Guys! We're currently planning an MS Reporters series aimed at helping people with MS manage the uncertainty that an MS diagnosis brings into their lives. I'd be really keen to hear your thoughts on any or all (or none) of the questions below: How do you manage this uncertainty? What helps a...

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@SophieShift

17 Jan 2020 09:54

Does MS uncertainty affect you?

https://www.youtube.com/watch?v=qGn6GTZf2S0&feature=youtu.be In ep 2 of Managing Uncertainty MS Experts Dean and Heather explain how MS uncertainty affects them the most 💬🎙️ Check out the full 'Managing Uncertainty' series here 👉 https://shift.ms/ms-reporters-dealing-with-uncertainty

@SophieShift

9 Jan 2020 14:40

Why does MS cause so much uncertainty?

❗️Introducing our latest MS Reporters series ❗️➡️ 'Managing Uncertainty' 🎙️💬 We all know too well that with an MS diagnosis comes huge uncertainty 😕 every MSer experiences their condition differently and each persons condition progresses uniquely. In our first episode, MS Reporter Clare chats to...

@Clare80

16 Mar 2020 22:51Last reply 14 Jan 2021 11:59

We've got this...

It struck me this weekend that people with MS are actually probably particularly well equipped to deal with the coronavirus outbreak. Compared to the rest of the population, we are all used to: - Being stuck in limbo, nobody can ever tell us how long something will last and if it will be permanent,...

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@HocusPocus

20 Jul 2019 18:12Last reply 28 Aug 2019 10:22

Not diagnosed - but truly convinced!

Hi there, Team Shift.MS, First of all - just wanted to say what a nice, upbeat site this seems to be. I've been sniffing around a few other MS/other random symptoms websites, but the vibe here seems really positive. :) So, hello, first-time poster. At the mo, the only MS I have stands for 'myster...

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@ChezN87

16 Mar 2019 11:15Last reply 26 Mar 2019 09:13

Housing

Hi everyone I’m in need of some impartial advice, I’m currently in a 2bed end terraced private let I’ve been pressing on with the council over the past couple of months (getting support letters etc) because a few months ago my landlord told me they’ll be needing to sell the house I’m in plus I have ...

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@s11taylor

12 Aug 2012 01:10Last reply 12 Nov 2020 13:24

Gay and MS?

Well, since all of you know I am dealing with maybe being diagnosed with MS, I just thought I would come out of the closet too on here while I'm at it.... LOL!!! Just trying to make connections :) My partner and I just got married last week... it's truly a bittersweet time. :) She has been so ...

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@Aaron_Paul

3 May 2020 17:26Last reply 5 May 2020 20:52

Limbo and fed up!

Hey I'm struggling with a positive outlook or general positive vibes. Just not having the best week with numbness, eye ache, fatigue etc and still no where near diagnoses and super low irrational mood swings I won't go into too much detail as you all know!!! So what's the best way to deal with a di...

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@nicholaschh

26 Apr 2016 17:49Last reply 2 May 2016 11:20

New User - hello!

Hi, I'm Nick and have SPMS, and am now wheelchair bound, having been diagnosed 16 years ago at the age of 42. I am married with three children, the youngest of whom is now 21. So the disease struck in the middle of their childhoods, which was the toughest part of it for me and my wife. We have been ...

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@sritawk

7 Apr 2021 23:28Last reply 10 Apr 2021 09:01

Hi, from Scotland

I was pointed towards shift.ms as a great community and resource for MS. I’ve been newly diagnosed, and will be on Ocrevus once I’ve had my vaccinations. I stay near-ish Edinburgh, but will at least be having my infusions at there. Bit of a rubbish hand we’ve been dealt, haven’t we? Some days I’m f...

Edinburgh, Scotland, United Kingdom

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@londonlad

7 Jun 2017 15:23Last reply 8 Jun 2017 14:25

First relapse and diagnosis, worried.

Dear all, I am a male 33 old year old. 3 months ago; unaware of what was about to happen,one day I felt off balance and within a week was hospitalised. The balance issues were accompanied with nystagmus causing double vision. I also had Horrible vertigo and vomiting even when drinking water. Of ...

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@ashia2013

14 Mar 2017 12:28Last reply 19 Mar 2017 23:16

Feeling like no one understands

Feel so crappy today. I'm on a few online groups that are supposed to be there to support people with MS. However, there always seems to be individuals that are not yet diagnosed that are disappointed when they are told that their doctor doesn't think they have MS. I find the behaviour of wanting an...

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@Noah

25 Jan 2017 04:14Last reply 27 Jan 2017 19:44

When To Tell Friends?

Hi everyone, I was diagnosed with MS in October after a couple months of uncertainty. I was just wondering how you decided who to tell about your MS. I have been having trouble with this lately. My Immediate family knows, and I did tell my close friends about the symptoms I was experiencing before m...

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@lightningduck

2 Nov 2012 22:53Last reply 3 Nov 2012 22:13

Relapse Reaction?

I've only had one real 'relapse' as such in that I noticed it. It was my first real noticeable relapse and the symptoms of such were what sent me to the hospital in uncertainty of what was happening, and led to my DX. So that means I don't have a lot of experience When you have a relapse, how d...

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@Henrietta

30 Nov 2020 08:06 EditedLast reply 24 Dec 2020 18:52

Books for the dark days...

Books I know I can rely on to steady me when I’m sliding down Embracing Uncertainty by Susan Jeffers - I really love this book and dig it out often, can’t recommend it highly enough, everyone in the world should read it! It's a bit old-fashioned but so wise and helpful. How to Stay Alive by Matt ...

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@Eigenhater

14 Jan 2018 14:23Last reply 17 Jan 2018 16:19

Is there any hope for my future?

Hi guys, somewhat of an infrequent poster here. I believe I have posted here before about my tough time living in limbo without a diagnosis and then actually getting my diagnosis and struggling with university - so I won't go too much into that. The long story short with all of that is I had a rath...

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@mattltsmith

29 Mar 2021 17:23Last reply 3 Apr 2021 09:44

Mental Health Support for People with MS?

Hey everyone. I'm recently diagnosed and I'm struggling a lot to come to terms with now having the disease and the uncertainty it brings. I've been trying to look around for appropriate mental health support, but I'm not really sure where to start looking. I'm still waiting to be put in touch with m...

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