Speakeasy

You must be logged in to create new topics.

Last reply 9 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 1 year 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 7 mins ago
MRI results

Hey everyone, I’m just wondering how you received your first MRI results, was it by letter or phone call? I am due to receive a letter concerning them after it is dictated, is this a good thing? Meaning if something had come up on the scan, surely the neurologist would call?

Last reply 10 mins ago
PIP declined, what now?

Hello, I’ve read many horror stories on here and I’ve just had a letter saying I have been awarded zero points! Zero! They’ve just said for example “you said you couldn’t plan a journey, I’ve decided you can” “you said you can’t prepare a simple meal, I’ve decided that you can” based on absolutely nothing as the assessor didn’t even ask about that! I don’t really know what to do as I don’t have any additional information, it’s just they haven’t taken account of what I put in my form. Is this usual? It’s mind of like they are saying “you are lying, you didn’t write around the floor in agony so you are ok”

Last reply 7 hours ago
Twitches & irritability

Can’t get any decent sleep these days, amitriptyline doesn’t seem to have the effect it once use to. I had added to my recommended dosage but still fails to benefit me. Perhaps a chilling and gasping Horror movie will cure the problem.

Last reply 8 hours ago
PIP reassessment

Hi all, had my reassessment two weeks ago at home by DWP expert, she said after assessment as far as she was concerned as i was over 65 and had PPMS she didnt think ineeded to be reassessed again and that she thought i should remain on full PIP , but it wasnt her decision she could only advise . Got letter from DWP today saying getting full PIP and that they would check again in 2029.
yours
martin hankins

Last reply 8 hours ago
Possible globus due to LPR

Hi guys

I have RRMS and I believe LPR has happened to me since I was dx 6 yrs ago. Have been referred to ENT clinic for suspected globus by my GP. Has anyone else had this and if so,how did you overcome it? 🤔 Many thanks for any input.

Last reply 8 hours ago
Ukrainisn community of MS

Good evening! It is a great pleasure for us to know about your activity in multiple sclerosis in your country! We are new community of MS in Ukraine and want to get information about this problem from abroad. “Sanofi” company recommend us to discover your activity in this sphere.
Now we have more than 20 000 patients all over the Ukraine, it is one of the most common disease among young people in our country. And we want to establish connections with foreign patient’s organizations, know more about your system of treatment. We would like to join your community, what we have to do for this!
Looking forward to your letter!
UCMS

Last reply 14 hours ago
Neuro appointment tomorrow

Meeting with my neurologist tomorrow to decide on what treatment I’ll be going with (Ocrevus). How long after the appointment does it roughly take to begin treatment? Also is it possible to delay treatment? I only say this because I have been feeling fine physically. But I pretty much suffer everyday with all the cognitive symptoms that comes with ms. I’ve found it hard to read people’s experiences with how it’s helped their cognitive symptoms it’s more of the physical symptoms of ms which I’ve been reading. Real life experiences not research on how it could help. I’m just so worried about what will be going into my body and the potential risks.

Has anyone here used Ocrevus and witnessed improvements with their cognitive symptoms?

Last reply 14 hours ago
Anti depressions

Hey guys
I’ve been going through a tough time mentally recently. I’ve been told about endep to help with anxiety and better sleep at night. I’m currently on gilenya has anyone tried endep and what’s the experience?

Last reply 15 hours ago
Gilenya – 6 months scan new lesion

Hi all,

I had my scan 6 months after starting Gilenya (Fingolimod) and it showed a new lesion. The rest were stable. The nurse told me not to panic as new lesions can appear when patients are between treatment (I was off treatment for a month between Tecfidera and Gilenya) so I will get a scan in another 3 months to see if there are any further changes. Has this happened to anyone else on Gilenya?
thanks all,
Gillian

Last reply 17 hours ago
We've only got the one brain…

I just stumbled across a neat presentation, with great graphics, from Professor Gavin Giovaninni.

It is good to see comparative images of the different expected outcomes depending on how your MS is treated, when and with what.

Note: I know the Slideshare App is often rubbish when viewed through a phone. Best on a PC/Mac

End of content

No more pages to load