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Last reply 11 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 2 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 10 mins ago
Muscle weakness

Hi all
Just a wee question. For several months a particular muscle on my upper arm would jerk and spasm like crazy – still does now and again. But now I’ve noticed that this particular muscle feels really weak – had trouble typing a letter in work today, and brushing my teeth this morning etc.
I do get rotten fatigue and general weakness, especially in my right leg – but this arm thing is new!
I’m not diagnosed – MRI results due on 5th June, so I’ve no idea what’s going on with me – but was wondering if any MS warriors can relate?
Thanks

Last reply 54 mins ago
Neuralgia is it a relapse?

Hi all. Not been on for a while been having a few issues with my treatment! Just want to pick your brains really. I’m suffering with neuralgia in the right hand side of My face for a few days now. It’s right the way down my right side. Could this be a possible relapse? Is it worth contacting my nurse about it? I’ve been off tecfidera for about 4 weeks due to severe stomach pain 3 Times a day every day, even after 5 months! So we have come to the decision to change my DMT yet again 😩 so I’m a little panicky thinking that I am in relapse so any thoughts would be really appreciated! Thank you xx

Last reply 3 hours ago
In need of people's opinions

I had my first appointment after being diagnosed and I have been given the option of 2 different course of treatment, but would love it if people could give me their experience with each of them to help me decide (yes I know we all will act differently)

I’ve been given the option between
– Tecfidera
– Ocrevus

So what are you thought?

Cheers
Nat

Last reply 7 hours ago
PIP Application

Hi Folks,

I had the dreaded brown envelope come through the door a couple of days ago and I’m now in the process of getting paperwork together to prepare my PIP application.

For those of you that have already been though the process, I was just wondering if any of you had been successful in securing a letter of support from your Consultant Neurologist. I’m seeing mixed responses online – with some Neuros downright refusing and others seemingly obliging, so I’m guessing that there’s no hard and fast rule and perhaps it just depends on the Consultants themselves.

Can any of you shine any light guys?

Thanks peeps

Suze xx 😊

Last reply 9 hours ago
Housing

Hi. I am wondering. Is somebody was on housing list for medical property? I am very close. Already waiting 3 years. Is someone know it will take more long? Becoze I am bit tire becoze where I am living now in house whitch not really suit me. Thanks

Last reply 10 hours ago
Lumbar Puncture and Dural Trauma

Like many of you here, I had a lumbar puncture as part of my diagnosis. Yesterday I learned about CSF pressure disruption. Apparently the CSF system is supposed to be a closed sealed system. Putting a needle in there can cause a leak. I rather wish I hadn’t learned this much yesterday. I wish I hadn’t been listening. I wish I’d never signed off on the consent form. I wish I’d not listened to my amatsu practitioner when she told me lumbar punctures are an insult to the body. I wish I could take back the days from this to that and take the other path. Like that moment in beauty and the beast when Belle takes the dark path because it looks like it’ll be faster. I can still hear the music.

This month I’ll be working out if dural trauma is a thing and if Gertie-Marx needles should be a global standard. Are you leaking? Am I leaking? How would we know?

Last reply 12 hours ago
Neurologist appointment

I need some advice please! I have been diagnosed with MS in March 2019. I was just told I have it, but not what kind of MS it is. I have an appointment with Dr Oliver Lily (MS Neurologist) and I just wanted some ideas on what questions to ask him. Thanks x

Last reply 13 hours ago
May 20

Today two years ago, just about to finish freshman year of high school. Getting ready for the sophomore year. Then out of nowhere my left leg was feeling weird and my left hand was feeling numb. The I told my mom about what was going on, so she took to a clinic, and they told me it’s probably cause I might be getting up way to fast, that way I’m always feeling dizzy. For a few days more it still kept happening so she took me to the hospital. They did a few test and told me I had MS. My mom was crying, I didn’t know what it was until she told me. So I got off the hospital bed and started to pray. A few minutes later, the doctor told me that they aren’t so sure, so they were gonna fly me to a different hospital. In that other hospital they did a lot more test to confirm that I have MS. All the test they took came out positive for MS. Those few day I didn’t know how much my life was going to change.

Last reply 13 hours ago
Tingling Question

Lately I’ve been experiencing a brief tingling sensation on various parts of both my legs. My Spine MRI was clear as of two months ago, not sure if that matters to mention. I just wonder could this tingling be a symptom? It’s not bothersome, just very noticeable and happens at least once a day for over a week.

Last reply 13 hours ago
My story

I got diagnosed in March this year and around the same time I found out my girlfriend of 4 years left me… it’s been 2 months now since I’ve had my first relapse.. Im been doing well but for the last 2 weeks I’ve been having major anxiety 24/7 I’m afraid that will tripper some Symtoms.. when I first found out I had ms my life left life it was ended I was literally a vegetable in my girlfriends bedroom. My whole body shut down slowly… but I got injections at the hospital that cleared all then symptoms I was going through almost instantaneously. On top of that my vision came back I had double vision since October.. I get scared sometimes.

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