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 20 mins ago
french new treatment

not released yet
hi all, I watch on France 24 Arabic Chanell an interview tallking about a new antibodies treatment
stops MS progression 100% now they are trying it on animals but in the next couple of years they’ll do humans trials

anyone heard of it?

Last reply 57 mins ago
Car Insurance

I was aiming on getting some car insurance for my new car (first car) and I went on compare the market to get some insurance quotes and when I first put my info in I forgot to say that I had a restricted licence to 3 years (is this correct??) and was quoted around 800. But when I corrected it it shot up to 1500!! Has anyone else had this?! Surely cannot be legal?

Does anyone have any tips on this? Or suggestions on companies etc??

Last reply 1 hour ago
World turned upside down

HI,
I was diagnosed in February this year and i am very grateful to the Doctor who saw me (Not my Usual Doctor) as she recommended i had a nerve assessment test and i was seen by a Neurology Doctor whilst there at the hospital ! 13 blood tests and a Lumber Puncture and two scans to then be told i have progressive MS. i feel the diagnosis should have given 2 years ago when i had drop foot (symptom of MS)
I struggle though as i get very frustrated at how little i am able to do these days compared to two years ago when i was working as a housekeeper in a care home and now i have to accept that i can’t clean my flat and have a cleaner come in. I have gone from using my walking stick to a walker and just recently got a mobility scooter which gives me a little of Independence so no longer stuck at home 24/7.
One positive thing that has happened is i’ve joined an MS group which i go to on a Monday and meet fellow sufferers and i am learning to knit,something i haven’t done for a long while along with Spanish.

Last reply 1 hour ago
Limbo land

Hi at the moment I am in limbo, I am 37 and started with pain in my hips which went on for a very long time on and off but became worse I was constantly tired and had numb feet and toes so I went to gp who referred me to the neuro I had a spinal mri which was clear in jan, since then my pain has become much worse especially at nights and has turned into a burning sensation in my legs like they are on fire, I am exhausted by afternoon and can sleep for 3 hours mid afternoon.
Since I last seen neuro my balance is all over the place and I keep falling over things, sometimes it’s like am drunk it’s the only way I can describe it when am wobbly.
I often find myself tripping over my words and say the wrong thing like fingers instead of toes, I often drop things at my work am constantly fighting this incredible tiredness.
I am on medication for nerve pain and I have low vitamin D levels too.
I am back to see neuro at the end of the month had nerve conduction studies on my legs which I was told was fine, I am at the stage I need answers as I don’t know what’s causing all of this ….. I suspect it’s ms.
I am under a lot of stress at the moment and I seem to be much worse again.
Would be nice to talk to people that understand how difficult this is and any tips advice would be greatly received

Last reply 1 hour ago
new french treatment

not released yet
hi all,
I heard on Franch24 Arabic channel
about a new treatment stops MS from progressing 100%
they tried it on rats this years they said it needs couple of years to be released they said they need to try it on humans first.

anyone heard anything about it.

Last reply 1 hour ago
Newbie!

Hi all,
So i am recently diagnosed with ms as of june this year. Ive read so much about it but still do hazy, it seems to have such a powerful& uncomfortable grip on me already. Maybe that will pass as i get more ‘used’ to it.
I was wondering have many ppl had to adapt their lives ie working hours/ patterns since being diagnosed and how to balance full time work, 2 children& feeling totally drained of all energy? Or has anyone found the key to keeping on top if it…if there is such a thing??
Thanks!

Last reply 2 hours 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 6 hours ago
Newbie!

Hello!

My name is Katie Harrison and I live in a remote town called Consett, County Durham in the UK. I am 28 years of age (soon to be 29).

I’d like to share my story of how I came to be diagnosed.

In the July of last year, I experienced a burning sensation in my left foot. A week later it started in my right but wasn’t as strong. This occurred two weeks after I had been knocked over by a teenager on a pushbike who’d lost control. It lasted for four to five weeks. Then the burning stopped but in October it started again worse than it had been before. Both times I went to the doctors but was told it was likely muscle pain possibly related to Sciatica. Then at the back of November, my sight was affected. It was later diagnosed to be Optic Neuritis.

My vision has returned although at times things can still seem cloudy, after having my eyes checked there doesn’t seem to be much change. I had my first MRI scan at the end of April and last month I was diagnosed with RRMS.

My Grandad had MS and sadly passed away in the 80’s in his thirties. I am not far from entering that stage of my life and while I know MS is variable and affects everybody differently I am scared the same could happen. My mum was 13\14 when he died and someone that meant the world to me left me when I was 13. My siblings are coming up to that age and it makes me even more fearful that history will repeat itself.

I am trying to remain optimistic though.

I have received information about treatment. Most of it was about a drug called Lemtrada and another called Cladribine. I’m not sure if these are the only options I have, or whether more will be discussed with an MS specialist, but reading about the side effects of both treatments scare the crap out of me.

The diagnosis has thrown everything to the wind. My husband and I were planning on starting a family at some point in the year. The Neurologist I saw said it shouldn’t stop me which is probably why he chose those two treatments specifically. But I am scared of having children and not being around.

I am due to see a specialist nurse this Thursday afternoon. The plan was to try for a baby before starting any treatment but failing to lose any weight that doesn’t look like an option anymore. I didn’t want to start just to come off again, but it may have to be what it is.

I am still indecisive about what treatment will be best for me.

I have my own set of questions, but is there anything I should ask about in particular?

Thank you for reading! 🙂

Last reply 6 hours ago
Energy crashes, overloaded brain?

Okay something I’ve had for many years and my dad has too. Energy crashes.

It’s hard to explain. But basically from time to time I crash. I’m okay I’m okay then boom. I can’t open my eyes, i feel really heavy. Then I can’t speak I can’t communicate I can’t think right i can’t move.
It can last anything from 10minutes to a few hours.

It does often happen if I’m out , if I’ve travelled or am travelling and if I do too much.
Sometimes I get a few minutes warning but most of the time it’s too late, I lie down if I can and let it take hold.

I can’t fight them if I try I feel like I’ll throw up. If people try to arouse me I feel really ill.i can’t get groans and mumbles.

Often times I just am not myself after eithernfornhours? I can’t concentrate, think straight right and often headaches beside also.

I’m coming out of one just now which is why I’m saying it. But yeah concentration to write this, it’s taken a long time to write it.

Last reply 7 hours ago
Lemtrada has made me worse.

Hi,

I’m new to shift ms and just wanted to share my experience after completing my course of Lemtrada. As Lemtrada is the leukaemia chemotherapy drug, it was quite scary to think I was putting Chemotherapy into my body to destroy the T and B cells that are responsible for giving MS. After about 2 weeks from the first 5 day course I had a relapse. I had not had a relapse for years and found this drug counter productive. I spoke to my Neuro and said this drug that is supposed to reduce relapses by up to 80% but had clearly failed. He advised that I need to complete course in 1 year. Well 1 year later and I have completed the course and feel like I am relapsing again! I am struggling to get around again. I have tried Tecfidera and had a negative reaction. I’ve tried Tysabri and had negative reaction and now this chemo drug. As I look back over the 22 years with this condition, I believe I would have have better off not taking any of them and would probably be more mobile than I am now. However the only medicating product that I have found that gives me back a life and a 70% improvement in mobility for a few hours is Alcohol. I have 2 bottles of beer ever few weeks and the result is miraculous. I would be interested to know other people’s experiences with these dreadful drugs.

Last reply 7 hours ago
Depression

Hi, I’ve been feeling pretty low recently, not sure if it is depression or just a mood. Talked to my GP and MS nurse, they both recommend counselling, which I haven’t started yet. I don’t know why but I just feel shame- I know mental health is totally normal and nothing to be ashamed of. Was just wandering if anyone here has been through something similar, and how they dealt with it.

Last reply 8 hours ago
Makes You Realise

Hi, I’m new to all this. Newly diagnosed with RRMS and awaiting medication. Taken them ages to get me to this point.
I really didnt realise that so many people were in the same boat.
It will be nice to chat with other people who understand.

Last reply 8 hours ago
Decision finally made

Hi everyone,

I’ve been on Tysabri for over 7 years now and unfortunately have had to decide which alternative medication to decide to now start on.

Ocrevus was brought to my attention and after all my researching I chose this as my desired choice.

I had one loot at Mavenclad then realised that fir some reason it was a tablet a day, every day, for a lengthy time.

I then remembered that this is not the case at all.

SO!!!

Ocrevus – 4-5 hour infusion every six months, OR

Mavenclad – 1 tab a day for 5 days, then same again a couple of weeks later then same again a year on then that’s it.

No brainer.

I’ll soon be starting, if all turns out ok, on Mavenclad soon.

I’ll be sure to update on here.

Wish me luck please, it’s one heck of a massive decision.

Thank goodness I’m not a worrier.

Last reply 9 hours ago
Foot Drop

Hello All

This is my first time on SHIFT MS but my MS nurse told me about the site.

I was diagnosed in 1998, and have weak muscles, fatigue and numb hands and a numb leg.

On the whole I feel I’ve been able to just get on with my life inspite of MS but in the last few months my left leg has been more heavy and dragging. I’m really beginning to hobble now but the worst thing about it is that my good right foot is becoming very sore, especially on the sole, due to the effects of most of my body weight falling on it.

Has anyone else experienced this problem? I am developing thick hard skin on the sole of
my good foot now and it all feels very uncomfortable.

I’d really appreciate any comments from anyone as I am not in contact with anyone
else who has MS.

Thank you.

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