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Last reply 4 months ago
Positivity thread!

Hi everyone,

I know that it just isn’t possible to stay positive all the time in the face of MS, and we shouldn’t be expected to, sometimes it’s tough and we just need to let ourselves feel how we do in that moment. BUT I would really love it if from time to time we could all share something that we are proud of, or something that happened to make us feel good, even something small. For example, mine is that the other day I was feeling very run down and tired, but had planned to meet up with some friends that I hadn’t seen in some time for a “paint night” where they teach you to do a simple painting all together. I didn’t think I could do it, but I wanted to try and pushed myself to get out and ended up having a really nice time, and even thought I was exhausted when I got home, I was so glad I tried!

Is there anything you can share that made you feel proud, or positive in some way?

Last reply 11 months ago
Community spirit

Howdy all,

Just a quick reminder that if you ever receive any ‘dodgy’ messages or experience anything that concerns you, please drop me or @stumbler a private message. You can email me at [email protected] too.

House rules can be found here – https://shift.ms/house-rules – if you ever want to check what goes and what’s off limits.

We want to make sure the community remains a safe space but we rely on you guys to keep us posted about any unwanted activity so do get in touch to run anything past us.

Cheers,
Sarah

Last reply 1 year ago
MS Hacks: Next topic?

HI everyone. It’s been a long time, but MS Hacks is back. This time, I’d like you all to tell me what you would like to see as the next topic.

for those of you who don’t know it, this feature is a way for us to share tips and lifehacks that we actually use in our own lives to make living with MS that little bit more manageable. So far, we’ve looked at dealing with the Summer heat, fatigue management, and working around cognitive changes. Which topic do you think could be most beneficial for you, right now?

xdee

Last reply 14 mins ago
Enough is Enough

Stroke 2014, Kidney Cancer 2015 Kidney removed 2015, MS Diagnosis May 2018, Lung Cancer confirmed Today 23/10/2018, this will be my last public post, Don’t give up the fight against your MS it cannot Kill you. Stumbler keep posting your vast knowledge to help everyone, it’s been a pleasure xxx

Last reply 2 hours ago
Aubagio Wash Out

What can I expect from the wash out after being on Aubagio?
Is it going to disrupt my life? Am I going to be running to the loo all day at work? Should I expect vomiting and diarrhoea?
Any advice welcome.

Last reply 3 hours ago
Symptoms and feeling anxious

I’ve been experiencing new symptoms from that which I had in 2014 when I had 2 mri’s that showed lesions but I didn’t have a 3rd scan which showed active lesions so I was told back then they couldn’t officially diagnose ms as they needed all 3 scans to show active lesions. Now 2018 and my balance is terrible, I stand on my feet all day in pharmacy and feel like I’m swaying, tingly and pins and needles in my forehead and my face went numb the other day. I get pheriperal nerve pain and I have damaged nerves. I also have autonomic neuropathy. I haven’t followed up on symptoms from 2014 as I was so tired and drained, Have I been irresponsible with having some lesions there? I’m going to see the old neuro in a couple of months. What were/are your symptoms? I think my type is relapse remitting? Thanks

Last reply 3 hours ago
Oral health research

Hi all,

Elysia, a student from the University of Leeds, is looking for people to take part in a research project. Details below…if you click on the survey link, there is an option to read further information before participating.

Thanks
Sarah

………………………………………………………………………………..

Study: Multiple Sclerosis and Oral Health: Understanding the oral health experience and needs of individuals with Multiple Sclerosis

Are you:
– Aged 18+ years
– A UK resident
– Diagnosed with Multiple Sclerosis

We’re looking for participants to take part in a research project to investigate the relationship between self-reported oral health and multiple sclerosis relapse. This study also aims to better understand what individuals living with MS feel needs to be done to best support them to achieve and maintain a good standard of oral health.

To take part all you need to do is answer an online questionnaire, this will take no longer than approximately 10-15 minutes to complete and can be accessed from the link below:

https://leeds.onlinesurveys.ac.uk/multiple-sclerosis-and-oral-health

Thank you in advance to all those able to participate!

Elysia Kirby

Last reply 3 hours ago
Dear All

I have never posted/joined anywhere before so I hope i am doing this right.
I have a question regarding relapsing I’m in a relapse at the moment how long do relapses generally last? Any information would be greatly appreciated from a very confused human being.

Last reply 3 hours ago
Cladribine -flu jab or not? Help please!

Hi everyone,
So I have recently finished my 1st year of Cladrbine meds (7th Sept) and no symptoms thankfully. I have asked my Neuros p.a to ask the neuro if he would support or advise me getting the flu jab and if this would be okay with cladribine. Didn’t get a response for 2 weeks and ask when I attended the hospital for check up and blood to be taken. I was surprised when the nurse told me the team including my neuro had discussed this in a meeting. Apparently my neuro said he doesn’t see the point as cladribine would now have made my immune system low and flu jab would be pointless. The nurse thinks yes no harm in getting now and again when my immune system is back to “normal”. I am scared if I don’t I may catch the flu but if I do get the jab it may have some affect on my ms. What do you lot think, any experience with this as the “experts” haven’t been overly helpful.

Last reply 6 hours ago
Relapse or coincidence

So I had the varicella vaccine 5weeks ago and the previous on 6weeks before that.

Well first dose was okay. Definitely had a small flare of symptoms a few days.
But second time round. Straight away very unwell. (The nurse isbbejgn very careful as to what she’s saying so that really worries me that they’re just pushing towards starting the next DMD rather than helping much with the issues).

Anyways..
After a week on time come a flair. Drop foot both feet, gladly inahve enough energy to atleast lift my right leg when I walk(most days not all) where I can’t lift my left at all when I walk.
Fatigue is most definitely through the roof, days spent just in a haze of pain trying to stay awake. (My baby sister kept commenting on my dropping face while I was fighting a fatigue crash). Also headaches are most definitely ruining me much more the past few weeks?
My mental health went through the floor, mood swings through the roof and just struggling generally. I spoke to my psyc two weeks ago and she was certain it wasn’t actually my normal mental health and certainly more likely ms related.
And worst of all spasm attacks. I’ve had them for years but not ally I’d only have a handful a year. Compaired with the past 4weeks where I’m having them every day if I’m lucky I get a day in-between. Had two back to back on Wednesday night. One right torso and shoulder then the single worst one I’ve ever had. My neck.
We tried to up my Baclofen but it made zero difference to these attacks…

Confused because nurse put in a referal to physio but she said I was lower body spasticity… When I never even mentioned my legs once cause it’s all my my upper body majority of the time. Compaired with my big standard spasms which are everywhere.

It took me two weeks before nurse was available (last Monday)… So last week we were trying the upped dose of baclofen, and she called on friday, nae luck. So that’s why she’s sent in a physio referal.
They’ve got me in to finally start Gilenya next Monday. It seems they don’t want to slow down to get this ‘flair’ (I’d say it’s obviously a relapse at this point) under control.

I’m most definitely feeling very lost right now. Not that I ever feel not lost these days.

Last reply 7 hours ago
Denied reasonable adjustments

Hi everyone,

Hope you’re all well.

I’ve been having a lot of issues with my employer. They know I have MS, but have refused to make any adjustments for me. I’m a school teacher and asked to be taken off duty at lunch time, but they’ve made me feel like I’m the really unreasonable and uncompromising one via very long emails.

Unsure what to do. Would appreciate any advice as I am on the brink of resignation. I’m new to teaching. I don’t find teaching difficult at all, but the extra duties and requirements are difficult for me and my school are refusing to budge.

Thanks,

Fraction.

Last reply 8 hours ago
Relapse?

I’ve only been officially diagnosed within the last year. The symptoms I generally have on a day to day basis are fatigue, numbness, hand weakness and awful memory. I have only had 1 ‘proper diagnosed’ relapse in the past year.
I’m on Plegridy and my last dose was Friday night.

I have felt awful since Friday morning and just seem to be feeling worse and worse. I have severe fatigue (it’s hard to even write this) I feel like my body is shutting down. I have no control of my balance, stumbling everywhere I feel like people look at me and think I’m drunk. My speech is badly impaired, I stumble over words, cannot think of the word or use a completely different word than what I wanted to use. My concentration is at a all time low, u can be having a conversation, go to say what I wanted to say and then it’s gone. My body feel tired, it’s hard to even hold my phone up.
I don’t know what to do, I feel like I want to just sit and cry, it’s like this weekend has been going on without me and I can’t do anything, even going for a wee feels like I’m trekking up a mountain 🙁

Is this a relapse? Can anything be done to help? I don’t even know if I should of contacted someone over the weekend.

I feel so lost and so tired 😥

Last reply 12 hours ago
Relapse misery

So had what I consider my first proper Relapse, course of steroids I still feel dizzy and have this dazed feeling. just not myself.
Actually feels pretty scary like it’s hit home this could be the rest of my like unbalanced etc.
Work is doing the best they can but when you’re job is caring for other people at the moment I don’t feel comfortable doing that.
It’s so shit.

Last reply 13 hours ago
CBT Too good to be true

Saw my ms nurse this morning. Apparently I’m not the only one who has asked about this since the news broke about the government legalising it for ‘medical’ purposes ‘quel surprise’ She said they have no access and no-one will talk to them about it, apparently they are hit with a brick wall at every turn. Thought it was too good to be true. Should be used to it by now, my gp won’t even prescribe vit d for me. The ms nurse told me what the recommended dose is, and she has agreed to check it on the next blood test, but she has to ‘prove’ to the gp that I’m below a certain level and then he might. Looks like buying it myself again😡

Last reply 1 day ago
Foot Drop supports

Hello all,
Since my last relapse my ankle strength has gone beyond me coping without a support.
Can anybody recommend a support that can help?
The sensations in my left foot are diminishing so my brain does not know where my foot is.
I keep twisting/rolling my ankle. My foot keeps getting stuck behind my right leg… so I fall over.
Any help would be of help. I cannot afford to spend money on cheap Chinese rubbish.

Last reply 1 day ago
Ladies! periods? MS symptoms get worse?

ok so I have never been keen on messing with hormones and have always been natural.
since diagnosis I have noticed every month 3-4 days pre menstruation my MS feels like I am relapsing and all my symptoms hit me like a train. takes me ages to get over this!! ruins nearly two weeks out the month.
so I decided to try the coil. solved the MS flare up problem but I am now an emotional wreck all the time.
feel a bit stuck now.
any of you ladies experience similar and how did you manage or stop the flares at time of period.
cheers guys 🙂

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