Speakeasy

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Last reply 3 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 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 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 7 hours ago
Anybody recovered from intention tremor?

Relapsed 3 weeks ago. Tremor in hands and legs. Steroids are done. Tremor remains, mostly in the hands. I’m a systems analyst, keyboard work all day, mostly code. I can’t work because I can’t hit the right keys. Has anyone recovered from intention tremor in the hands? Adaptation recommendations?

Last reply 9 hours ago
ms and ear problems

Hello, can anyone comment on this, I woke up with ear/hearing issues. This is sort of like tinnitus maybe? it’s not really a ringing, but more like a vibration especially with loud noise or even when I speak out loud? It is strange but I always try to blame things on my MS. I plan to go to an ENT just to check for fluid or infection but it is just a sensation I have never had and wonder if anyone can comment on this? Thanks.

Last reply 9 hours ago
Driving license

Sent off my driving license for renewal and they’ve now come back and said I’ve got to have a medical with the doctor. I didn’t have to do that last time, I’m pretty sure I read somewhere that some doctors won’t give you permission to drive as they wouldn’t want to accept liability?
Nothings changed, I’m feeling fine and I’ve no obvious or noticeable symptoms so why a medical check now?
Ta muchly peeps 😊.

Last reply 11 hours ago
Another poem

Morning MSdebators, here is round two of my once in a blue moon cogs actually ticking poem writing a thin type thing……

Sit down and get comfy, and listen, you’ll see, il tell you a story of what’s matter wi me.

I woke up one morn, at the arsecrack of dawn, my eyes were beggered, I could see nowt, I Felt all forlorn.

So I went for a eye test, which turns out to be optical myelitis, which could be worse at least it’s not
Infectious hepatitis.

Weird prickly sensations, cannabis to get baked on, this ones widespread across the ms debating nation.

Not much neurological function, quite often results on, brain farts a plenty and no fecking gumption.

Chronic fatigue, Iv hit the big league, I’m clumsy and break stuff, a walking blitzkrieg.

Choruses of you don’t look sick, you can all eat a dick, I walk like a penguin, In a bush I may shit.

Legs like floppy dildos, and feet that are froze, it sounds far fetched but I can’t even feel me bloody toes.

Me eggs are all scrambled, me noggin is fogging, my gears are all creaky, me engine is knocking.

Me bomb doors are knackered, I dare not even fart, for a giant turd may escape and that I do not want to part.

My bladders on strike, can’t get anything right, suppose it’s all down the this bloody multiple screroseARSE shite.

Now you know what the half is, and what Farse this ms Biz. I could reminisce but I’m scared that in me keks I will piss, so I bid you adieu, a cee thee to you, iv been hangin on too long & I’m rushing tet loo…

Last reply 12 hours ago
So fed up with DMT plegridy avonex :(

Hi all. I have been taking plegridy which is an updated version of avonex ( I think. ) … And I take it every two weeks ( self inject ) and I makes me ill for near to a week with side effects, the first two weren’t as bad, as they were lower dosages but the others , which were full dosage have been so bad, I feel like its ruining my life as I can’t work or do anything at all, especially if it’s just after I inject. I have to plan everything down to a tee, as I know I’ll be bed bound with flu for three to five days. Or just be ‘not right’ to go out etc. I’m so fed up. Please can you tell me if it will improve. I’m seeing my nurse soon to discuss coming off even though I have only had about 7 injections in all.

The shivers and shakes happen a few hours hours after the injection. They are the worst, and then the flu comes. And nausea. Light headed and even sometimes mild depression.

Anyone else try this ? or persevere ? or come off? I would love to hear from you, thank u xxxxx hugs n love

Last reply 12 hours ago
Undiagnosed – what do people think

Hello, I am 30 years old. When I was 18 I had optic neuritis, diagnosed swiftly in eye casualty. The symptoms were horrific with complete blindness in the eye and awful pain with eye movement requiring me to wear an eye patch.
The ON healed quickly and you would now never know there had ever been a problem so I have made a full recovery.
I had an MRI at the time which was clear and so I was discharged with the neurologist stating I was in the low-risk category for future MS development. Since then, it has always been in mind.

Eight years after that episode I started developing an aching behind one eye. The pain would come and go, lasting days, disappearing for weeks, returning for another week, disappearing again, etc etc. After two years of this coming and going problem, I saw an optician. The optician could not detect any issue so I was referred to an eye specialist at the hospital. They conducted tests and also couldn’t find any explanation and did an MRI of my eyes and brain. This MRI was done 10 years after my first one. They said it was definitely not ON and in fact the scan was completely normal. I was subsequently discharged. Since then it stills happens now and again (4 years on) but not so frequently. I should add during this time I was on high dose prednisolone for my Crohn’s disease and it had no impact whatsoever on the eye aching so perhaps it is not inflammatory.

Now for the past 5 months I have had tingling/altered sensations in my right calf. Each day the sensations are in a different place ranging from the top of my shin, middle of the back of my calf, back of my ankle etc. Again these weird feelings have come and gone and come and gone over the past 5 months. The sensations may last a couple of weeks, then disappear completely for three weeks, then return for another 3 weeks, disappear, return etc etc. It doesn’t get any worse each time and is always from below my shin to my ankle (never thigh or foot and never left leg).

I am feeling despair about all of this. I feel like the only explanation is MS. (I’m tested regularly for B12 due to my Crohn’s and it’s always normal). However, would a diagnosis benefit me? I am only 30 just finishing my PhD and was hoping to get a job where I could work abroad for a time. I’m already taking 50mg of azathioprine for my Crohn’s, which may help the MS if I also have that.

Are these symptoms typical of MS? My ON case came on suddenly, was severe, and then gradually improved and disappeared. These symptoms are just niggling and keep coming back after disappearing, disappearing again and then coming back again.

Last reply 13 hours ago
Self propelled wheelchair 1month now.

I gave in a few months ago and decided now was the time to ask about a wheelchair. So in october i had the assessment (we get one free chair on the nhs here).
They wanted me to go for an electric wheelchair as i have days with severe upper body weakness, relatively rare but typical i had one during the assessment.
We agreed instead id get an outdoor self propelled wheelchair and then apply for funding to cover electric wheels (e-motion) or a smart drive.
Once i had the assessment i made a semi smart decision to start renting wheelchairs in the mean time. This meant i could still get out and i could get some practice.
I got my chair at the start of december, perfect timing as it was two days before my baby sisters christmas show, her last one ever and we had to travel there to see it which takes just a few hours via public transport. I literally could not have made it without my chair that day.
Understandably my nurse and such as wanting me to “keep walking as long as possible” but my veined attempted at shuffling a few feet with breaks isn’t exactly the life i want to live. Maybe when its warmer things will improve but for now the chair is severely needed and used outdoors. I must admit my actual ability to walk has improved slightly since using the chair. I have had so many less falls since I started using wheelchairs.

So I guess what I can say today is that I’m sooo glad to have decided to get a chair, I highly recommend when you get that realisation you might need a chair. to do it. dont wait and wait. you will regret it, i know i do.

Last reply 15 hours ago
Experiences of Ocrevus

Before I start, I want to say, I know it’s early days…

I was diagnosed in Aug 2019 with RRMS after 18months with a CIS diagnosis. My initial scan showed lesions but they couldn’t tell how old or if active. 6 months later a second scan was stable. 6 months later my third scan showed new lesions which meant I got the diagnosis and a week later I started Ocrevus.

Right now I am lucky in that I have very few symptoms, asides from pins and needles. However, between my second and third scan I had periods of what I can only describe as vertigo. I have now linked them to the development of the new lesions that were evident on the subsequent scan. As I say I started Ocrevus in early September last year. I had two half doses and am due my next full does on Feb 20th with my yearly scan due in June. However, since Christmas I have been experiencing vertigo again so I fear the worst – new lesions.

My questions are:

1. Does this mean Ocrevus isn’t working or is it too soon to know?
2. How do you know it’s not working – do they look for specific evidence?
3. How quickly should you expect to see improvements
4? What next?

I have sent this questions to my neurologist this morning but thought I’d ask here in case anyone has any insight.

Thanks
Lisa

Last reply 15 hours ago
First MS Patient Dosed in Phase 2 Trial

The first participant has been dosed in the Phase 2 REPAIR-MS clinical trial examining the effects of CNM-Au8, Clene Nanomedicine‘s investigational remyelinating therapy, on brain metabolism in people with multiple sclerosis (MS), the company announced.

https://multiplesclerosisnewstoday.com/news-posts/2020/01/09/clene-nanomedicine-announces-first-patient-dosed-in-the-repair-ms-clinical-trial-for-the-treatment-of-multiple-sclerosis-with-lead-nanocatalytic-therapeutic-cnm-au8

Hope 2020 brings in more remyelinating therapies to help with the repair …

Last reply 15 hours ago
I think it's a time for a wheelchair

This week is not my week. I hurt my hip after popping it on Thursday and while it’s healed up pain wise my legs on a whole gave gone to the bins.
Walking just around the house has become unbearable, standing for just a few minutes makes me soo unwell I have to sit down.

I went to choir today. Which normally would be a 2minute walk to the bus. Then a 5-10minute walk to the concert hall. (It’s literally o the same street as the bus stop)
Today. 5minute walk to the bus and a 20minute walk to the concert hall. On the way back out it took me almost 40minutes, no joke to get from the concert hall to the bus stop. There were a few tears shed to say the least just trying to manage this feat.

I knew it was going to be a huge challenge because I’ve been struggling around the house but I never expected it to be this hard.

So yeah. I’m going to my gp(doc) tomorrow because I can’t handle this . Kicker. I have no money to taxi it. So I’m going to have to struggle my bahookie there.

Oh already use a crutch and walker everywhere including round the house.

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