Speakeasy

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Last reply 1 month 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 2 years 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 3 years 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 3 hours ago
Fed up

Do u ever get them days where u just feel as u wanna run away , ive had loads planned to do around the house to tidy it up and sort , I get sat down and think bugger it carnt be bothered , am tired its hot to hot for me the kids are running in and out , I’m at the hospital tomorrow to see what can be done about my toes hoping when I get them sorted my moods will change . One day your on top of the world the next you are so so low , i wish I could take a magic pill and be better xx

Last reply 3 hours ago
Render11 – Scam

Beaware of Render11, I accepted a friend request in the hope I might be owed millions from a relative that doesn’t exist.

I received a gibberish message and it was the usual scam.

Last reply 4 hours ago
Something for the future

In the future, when our kids are the parents… 🤔

‘Oh my god, these kids are doing my head in. Six weeks is so long…….’

Six weeks? SIX WEEKS?? Try six chuffing months! You parents today haven’t got a clue what we went through in 2020. Six months of entertaining you little shits, and we couldn’t even go any-bloody-where. All we had was Netflix and a colouring book. We had a heatwave, and couldn’t do any baking because every chuffer had stolen all the flour. Couldn’t make macaroni necklaces, no chuffing pasta. Praying nobody gets sick as we had two toilet rolls to last us til we dared even get in a QUEUE to go to a shop, and ended up using kitchen roll. We had to stand on spots on the floor and risked being tackled to the ground if we dare walk up an aisle the wrong way in Tesco by JimBob in his visor, who was working there cos he’d lost his job in a pub, which we couldn’t go to for a night off cos they were all bloody closed. We only saw people on a Thursday when we stood and clapped for nurses on the street, whilst wondering what would happen to Sharon in the Vic in Eastenders but not knowing because…..the soap operas all run out! Yep kids that’s right, no soaps!! Imagine that. We had to download things called zoom and had to attempt to do meetings in our houses whilst you lot ran around telling everyone you were bored, or hot, or STILL hungry despite the fact we’d made you fourteen breakfasts. We had this fit fella every morning attempting to get you fit on YouTube but that lasted all of two episodes before you put spongebob on. We had to attempt to teach you, yes you! I was expected to print out all these bloody sheets, running out of ink at midnight attempting to print out the monarchy timeline for you to give it four seconds of thought before saying you didn’t want to do it and that’s not how Mrs Jones does it. We had to give up our phones so you could FaceTime your mates, or download more games, if it gave us five seconds of time to tidy up the kitchen only to turn around and see the living room had now been turned into a ninja warrior assault course. We dug out paddling pools, we got stung by wasps, we redecorated gardens and bedrooms, we hoovered-a lot, we forgot what a bed ‘time’ was, we gave in to technology far too much, we had no money and ordered shit off amazon in the hope it passed an hour for you, we then had a chuffing postal strike as every postman got covid, and waved to other humans through windows on our one hour allowed out every day. Cash?? Didn’t have any, and if we did you couldn’t bloody use it as no chuffer accepted it for fear of touching you. Swimming? Nope. Cinema? Nope. Bowling? Nope? McDonald’s? Nope. Playgrounds? Nope. Taped off like a crime scene. None of that. 6 weeks?? Piece of piss mate.

Last reply 4 hours ago
Newbie here!

Hi, I’m Sofia and I was literally diagnosed last week after suffering very mild symptoms here and there since January 2019 which were overlooked, belittled and misdiagnosed. Unfortunately I ended up going into a massive episode (I still don’t know lingo) and i woke up one morning not being able to walk or even being able to pick up my phone to call someone for help. I’m not on any treatment yet as I’m still interim waiting to be seen by out patient teams. There’s so much I don’t know and so much I’m going to have to learn to best prepare me for navigating my life going forward.

Im hoping I’ll be able to meet people and build meaningful relationships that’ll help me in my new life!!!

Last reply 5 hours ago
Moving hospitals

I am contemplating a move to Margate from London. Does anyone have advice on neurologist/hospital in East Kent please? Somewhere that has an outpatient program?
I’m very happy with my Neurologist in London so moving hospitals makes me slightly nervous.
Thank you 😊

Last reply 6 hours ago
1st Ocrelizumab / Ocrevus experience

Hi, just thought I’d share my experience of my 1st half doze from earlier today in order that someone else may get some use from it. 1st half doze completed today in Glasgow. So far, so good. I got out about 330pm. I was given lots of advice by lots of people. Seems to have worked well. Few sweets, packed lunch, lots and lots of water, phone for music and netflix…with obs done every half hour it has fairly flown by. Hope this helps more 1st timers in the future. Feel free to contact me if you want any more details of my 1st experience of Ocrelizumab/Ocrevus. Thanks, hope you’re all well, take care and have a great evening. Steven.

Last reply 6 hours ago
Alternative to pharma products for pain

Hi all, I’ve been on pregablin full strength for 4 years, and although it does help sooth the nero pain, help with sleep and my anxiety – it doesn’t completely quosh the pain I feel everyday.

The gnawing & arthritic pain (I osteoarthritis too!) – which is in back, fingers, hip & knees. I feel very low at times with the amount of pain I have to put up with but keep going, even powering through it.

I’m not at a point that I no longer want to take full meds & hope for a bit better qol.

Any suggestions, what to try and where to buy/ask for it?

Thanks and I wish you all well xxx

Last reply 7 hours ago
Sense of smell & Ocrelizumab

I’ve recently been started on Ocrelizumab and have noticed over the past week that my hair smells funny. At first I thought it was due to the heat and my head sweating but even straight after washing it I can smell it. I’ve been describing it like a sweaty smell or the smell of a wet dog. A couple of my friends have had a sniff and say all they can smell is shampoo. It’s really baffling me so I’m wondering is it a problem with my scalp, is it a heightened sense of smell or am I just imagining it 🤷🏻‍♀️ Would be interested to hear if anyone else has experienced something similar.

Last reply 8 hours ago
tec and exercise

Morning all,
I’ve been med free for 15+ years since diagnosis but a couple of recent relapses (including my first learning to walk again episode) have put me on a treatment plan.

I’m due to start taking tecfidera soon and wondered how it may affect my exercising?

I currently cycle on a static trainer every other day doing HiiT workouts, has anyone seen Tec. affect their exercise routines?

I’ve only recently started exercising again after the last relapse, i’ll be pissed if Tec is going to affect that!

Any advice will be greatly appreciated!

Last reply 15 hours ago
Spasticity – great word!

Still in the throes of diagnosis.
I was prescribed Baclofen for my left leg but reacted badly including losing all balance and having double vision. Then moved to Gabapentin. My left leg has now swollen and I cannot wear my trousers let alone shoes… What next? Your experience please…

Last reply 22 hours ago
Hair falling out

Has anyone else dealt with hair falling out or hair loss? I’ve been dealing with MS symptoms for a little over a year and have noticed that my hair falls out much more than it used to. If I run my hand through it I might come away with five or six hairs. I’ve noticed I tend to lose eyelashes and brow hair more frequently as well. It’s not yet visible or patchy but I’m a bit worried. Anyone else had this experience?

Last reply 1 day ago
In need of treatment.

Hey guys, it’s been a while since I’ve come here and hope you are all doing well.

I have been suffering quite a lot of late due to the immobility of my legs and the constant pains below the waist.

Does anyone recommend any treatment to take or maybe some advice to treat spasticity and prolonged agony. I have heard that Gabapentin can be useful in moments like this.

Thank you.

Last reply 1 day ago
Rebif in pregnacy

Hello everyone, i’m new here, and i could really need advice.

Does anybody have experience with rebif and pregnancy?
I’m on Rebif since January 2020. Now i am 6 weeks pregnant. I talked with my neuro, and she told me that new studies (from 2020) showed that Rebif is okay during pregnancy, but i am skeptical about that. Also, i found research showing that Rebif is okay in first three months (there are no evidence for next six months).
I really don’t know where my thoughts are going. I’m scared of relaps after birth, because my baby will need me and i dont wanna take any risk. On the other hand I don’t want any risk to my baby (if I decide to continue with therapy).
But the fact is that i was using rebif till 10 days ago, so i think that Rebif is still inside of me and it will be at least two months, so damage is done (if there is damage).
Does anyone have experience with this or some advice?

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