Speakeasy

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Last reply 7 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 14 mins ago
Pregnancy and Ms

Hi friends,
Just to want to know there is any impact of pregnancy on MS?
Due to it disability increase? Attacks will increase ???
And MS will transfer genetically to next generation?
Bcoz I saw most of the cases which have MS and pregnancy they have twins? Again in twins there is more chances to transfer MS??

Last reply 37 mins ago
Free. Free at last ;)

2nd half of the 1st full Ocrelizumab dose today. Having been on either injections or oral meds for the last god knows how many years I heard something amazing from my nurse.

As a creature of habit I idly asked how frequently the required blood tests happened. The reply was, ‘oh nothing for 5 months” I nearly fell over with the shock.

This means I am have complete freedom from of movement for this time. The sense of liberation is hard to comprehend. If I want to do something abroad – say working – I am no longer tied over blood tests, prescription repeats, carting the appropriate meds around, setting endless alarms to remind me to take them and so on.

From a straight quality of life standpoint, this is a-mazing for me. If you’ve ever been tied to the hospital and the UK you’ll get it.

Free healthcare. What’s not to like?

*Skips into the distance whistling an inane tune…*

Last reply 1 hour ago
New to this site

Hi all,
I am from Dublin Ireland. I was diagnosed in November after years of symptoms. I was waiting for other medical issues to be rectified before contacting my MS nurse re starting meds. I have been offered Copaxone or Tecfidera. I am worried sick about starting any meds tbh considering 1 of the side effects is possible brain inflammation that cannot be cured. I have RRMS. Just looking for advice for these or any other meds that people are using. What worked for you?
Thank you x

Last reply 2 hours ago
MS hug

Hi there,
Can anyone tell me what the ms hug feels like? I’ve been having pain across my chest for a few days, especially when I bend down or when I’m reaching to get something.
Not sure if it’s the ms hug or ice just pulled a muscle through work!
Thank you ☺️

Last reply 4 hours ago
INSOMNIA

Hey guys I’m new to this site. Lately I have been experiencing insomnia and I’m wondering if anybody else does to and if so what do you do about it? I’ve tried a lot of things but I am still suffering. So if anybody any advice that would be greatly appreciated.
I am new to this site so hi everybody my name is Kirsten and I was diagnosed in be 2006. Started treatment with rebif and am now Gilynia

Last reply 4 hours ago
2nd line treatment with only 2 relapses

Lovely people, thanks for listening!

My story started a year ago with only 2 minor relapses, like numbness in my hands and legs and later on I lost my left eye-sight for a while.
This was followed with a 1st line treatment (Copaxone) for the last year or so, and I fully recovered from those relapses.

I’ve had good year, not one single relapse since then, but the MRI scans show declination, more lesions each time.

My doctor now suggests to switch to 2nd line treatment, as a preventive measure.
A pro-active approach you might say.

Tysabri, Mavenclad or Lemtrada are the options they gave me.

What are your thoughts?
What is your experience with any of these drugs?

Last reply 4 hours ago
My history

Hi, I just signed up and just wanted to quickly introduce myself. I have MS for 20 years and am either secondary progressive or primary progressive. My neurologists couldn’t really agree… Over the years there has been quite a lot of activity. Currently, I’ve been in a wheelchair for the last five years. In May last year, I started with rituximab (the prior version of Ocrevus) and I just got a letter back from my neurologist that the control MRI after my second full injection in December was a very positive one and there have been no recent activities. Now, let the improvements start. I could think of a couple.

Last reply 7 hours ago
New member

Hello, I’m new to this site so I’ll give you a little background. I was dx 17 years ago and have been on copaxone for 16 1/2 years with great success. I retired a year and a half ago at 58.
I belong to an exercise support group, we’ve been together for almost 9 years!
Have a great day!
Brenda

Last reply 9 hours ago
The First Ocrevus Dose

Nurses: “How are you feeling?”

Me: “Like I’ve won the lottery. Let’s get going before y’all change your minds.”

So, for me, it was entirely uneventful. Nothing to say other than my ears went a momentary pink and warm and I have the mildest of headaches.

I am sitting at home wondering if I have been pumped with saline all day 😉

Next infusion in a fortnight’s time.

The literature concurs with the little or non-existent infusion reactions.

Given the drugs efficacy and excellent safety profile, the clinical thought leaders support of it and c. 30k administration instances to date, I really struggle to understand why someone wouldn’t take it if offered.

Br,

Dominic

Last reply 9 hours ago
Lemtrada worries

Hi guys. This is my first time posting here. I was diagnosed with relapsing ms in November last year. My Neuro has recommended Lemtrada as I had a pretty nasty relapse which has blinded me in one eye. Ive been given a date to start Lemtrada the 18 Feb this year and as the date gets closer I am questioning my decision to have this drug for fear of the side effects. Ive been researching the benefits of the drug but still have this niggling doubt. Are there any members that decided to ride out the natural course of MS rather than be pumped full of chemicals? and if so do you regret not taking a DMT?

Last reply 9 hours ago
Bad Headaches

Hello everyone, first time here reading everything. I have many questions but my first is I suffer very bad headaches almost everyday. Would this be from the lesions I have and if so nothing I try helps ease it is there something I am missing on this? Thank you all.

Last reply 11 hours ago
A question.

Morning. I posted last night after joining. This morning it says my post has been reported for inappropriate content.
Could someone explain why please.
If I have done something wrong I would like to know.

Last reply 11 hours ago
New to this group.

Hello. My name is Julie, I joined this group tonight.
I live near Nottingham in the U.K.
I was diagnosed with RRMS in 2005.
I have just started on Aubagio. Really hope it works for me.
I have had 2 failed DMD treatment’s. Copaxone and tecfidera didn’t suite .
I also have Diabetes and recently diagnosed with arthritis in both hips and inflammation of the tendons in my right hip. I had a steroid injection for my right hip, it’s due to be repeated next month.
The only problem I have with steroids are they give me high blood sugars for a few days.

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