Speakeasy

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Last reply 2 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 9 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 5 mins ago
describe your MS with a film title!

because we should get to have some fun too 🙂

I’ll start –
I think mine would be ‘a series of unfortunate events’ ha

yuma xo

Last reply 10 mins ago
Brain Fog & Clumsy

As I new to all this, I have done some homework but nothing like asking real life people who know first hand!
Does anyone else experience clumsiness and brain fog. Some days I feel like Im not as smart as I used to be, for want of a better expression. Its like my brain is on a go slow!

Last reply 12 mins ago
Anybody knowledgable on relapse protocol

Hi

When you are having a relapse what do you do?

Do you have to see a neurologist to be prescribed steroids ?

How long does it take for you to get the steroids ?

Thanks

Rachael

Last reply 41 mins ago
Nerve pain in feet

My feet are on FIRE tonight. I keep looking at them expecting to see them huge & swollen; but they’re fine. MS is so, so cruel. I’m taking 600 mg of Oxcarbazepine twice a day. It helped for a while but my feet are killing me today! Any suggestions for relief???? Please.

Last reply 1 hour ago
Tecfidera and Optic Neuritis

Hey All, I’ve been diagnosed with Ms within the last couple of weeks. Today was my DMT appointment, my MS nurse and I have narrowed treatment down to either Tecfidera or Aubagio.

I see from older posts that some people have experienced hot flushes as a side effect of the drugs so I wondered if anyone has experienced taking this DMT while suffering from Optic Neuritis? I ask as I also suffer from a temporary worsening of symptoms particularly when my body temp raise so had wondered if the flushes could negatively impact my vision.

Secondly, if any of you guys started on say aubagio and then moved on to Tecfidera I’d love too learn about what the differences were, the pro’s and cons (side effects, worsening of symptoms, longer-term issues etc) ? While I understand the information give by the MS trust on the side effects, andTecfidera being ‘more’ effective, I guess I still want to do a bit of due dil on the treatments before making my decision next week.

Much appriacted
Guy

Last reply 1 hour ago
Ginger hair and ms

Dear all,

I read recently that ginger hair people has more vitamin d , real fact or not I don’t know. I was wondering how many of you have ginger hair and MS .

Last reply 2 hours ago
What age were you diagnosed?

Hi all I’m just wanting to ask a question and that is how old was everyone when they were diagnosed I was 17 and how old are you now just curious to see which everyone was/is currently.

Last reply 2 hours ago
-_- h8 to ask this. Bladder issues

Could people with MS recovetI got it same timee as leg recent symptom
My leg recovered my bladder is weird
I feel it full but -_-“ didnt want to mention it but it started to wake me up go to loo nothing
For weeks now

Last reply 3 hours ago
Very true words

When someone asks me about MS, if they know anything, it’s usually that it affects a person’s ability to walk. If only it was that simple….We (MSers) have a little of almost every disease to deal with. Think about it – the brain controls everything the body does. MS causes brain damage and causes nerve pathways to misfire. Like people with rheumatoid arthritis, we have joint pain and inflammation. Like diabetics, we have neuropathy in our feet. Unfortunately, we usually have that same nerve damage throughout our body. We can also lose our vision. Like a person with lupus, we can have heart issues. Like a person with ADHD, we have trouble focusing. Like a person with cancer, our body is killing itself. We rely on toxic medication that compromises our immune system, we can have radiation, and our quality of life is not great. Like a person whose had a stroke, we can lose our ability to speak, have one-sided body weakness, lose the use of our limbs, etc. Like a person with Alzheimer’s, we have problems with our memory. It may be short term or may last forever. Like a person with Parkinson’s, we have body tremors.

And what MS doesn’t do, it makes us more vulnerable to comorbidities. We deal with everything listed above…widespread pain, chronic fatigue, trouble breathing, depression, anxiety, muscle spasms, trouble eating and digesting food, bladder and bowel problems, on and on. On top of this we have to deal with most of our symptoms being invisible. Not only are we judged by strangers, co-workers, friends, and family, but also the medical profession that has taken an oath to help those suffering…..so don’t ever call us weak. We’re the same person as we always have been – just a little different. Ask – care – help without judgment.

Shared in support of all MS brothers and sisters ♡

Last reply 3 hours ago
Single mums, ms and work?

Hi, guess this goes out mainly to single parents! I have split from husband, have 2 children (4 and 7). I need to get work. Do U go part or full time? I don’t want to let ms stop me having full time job but am I gonna stress/push myself too much? No help with kids either!!! Thoughts? X

Last reply 4 hours ago
Feeling emotional

Hi friends! I’m feeling extra emotional today and wanted to post, maybe looking for support and always suggestions. Today having severe bout of TIRED. I’m always dizzy, more when tired. Yesterday and past week I really pushed myself I think because I was feeling ok and wen I’m feeling ok I want to do extra because I never know if I will keep feeling ok. I’m not sure if I have exacerbated something now my vision is a touch blurry. Maybe when I’m feeling well I need to learn better to pace myself. I’m just sad to know I can’t predict my days and I look ok so no one really understands how tired and worn out I feel. I’m not like everyone else I have no stamina no energy and if I do, which is rare, I dare not use it. Sometimes I wonder ow long I can keep working full time, I need to make it to retirement. Well as u can tell there is much on my mind. I suppose the emotional state I’m in is not unusual. I thank you for listening and welcome any words of wisdom.

Last reply 4 hours ago
Newly diagnosed RRMS. Bladder query

Hi, Thanks for adding me to this group. I was recently diagnosed with MS. I had slurred speech which was treated with steroids. I’ve been having trouble passing urine, sometimes I go normally, other times I have to sit and wiggle before passing a pathetic amount of urine. Had a bladder scan but not sure what can be done. Any advice you guys can give me?

Last reply 5 hours ago
Ocrevus

Hey everyone! After a bad relapse my MS specialist and I decided to do Ocrevus (was on Tecfidera) and I was just wondering if anyone has tried it or knows someone who has and what their experience with it was like. Also, they are doing further specialty blood tests (even though my first blood test came back negative) to see if I have Neuromyelitis Optica (NMO/ Devics disease) in addition to the MS because one of my lesions was really big and the amount of pain I’m in all the time is more consistent with NMO. Also, they suspect NMO because the steroids don’t help me, but plasmapheresis does. Does anyone have any knowledge on NMO, I haven’t found a lot. Thank you all so much and have a wonderful day!

Last reply 7 hours ago
Ocrevus users…

Hi,

I’m due to start my first treatment of Ocrevus next Thursday. My neurologist said that afterwards I should be fine and can drive home, go to work the next day, carry on as normal.

Is that what other people have found after their first treatment of Ocrevus?

Basically, I just need to know if I should get someone to take me home afterwards!
Thanks x

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