Multiple Sclerosis - Charity Walk

[fifty shades of blade]

Hers was Beta Interferon

Yeah, I was referring to the chemo treatment known as hsct or ahsct. Beta Interferon (branded as Avonex) was the first DMT ever available for managing relapsing remitting MS in the UK, introduced in 2001.

Some promising work ongoing regarding remyelination trials (e.g Octopus trial in UK) , plus the impact of BTK inhibitors for slowing down disability progression and impacting what is known as 'smouldering MS'

 

[grena blade]

Yeah, I was referring to the chemo treatment known as hsct or ahsct. Beta Interferon (branded as Avonex) was the first DMT ever available for managing relapsing remitting MS in the UK, introduced in 2001.

Some promising work ongoing regarding remyelination trials (e.g Octopus trial in UK) , plus the impact of BTK inhibitors for slowing down disability progression and impacting what is known as 'smouldering MS'

I've had ms 17 yrs been on a few different dmt over the years been on kesimpta now for a year fingers crossed this keeps me going

 

[fifty shades of blade]

I've had ms 17 yrs been on a few different dmt over the years been on kesimpta now for a year fingers crossed this keeps me going

That's deemed as one of the most effective DMTs available. Its a monoclonal antibody and works by targeting B cells in the lymph nodes. Its these cells that mistakenly target the myelin sheath. Hope it is working for you. Any concerns speak to your MS Nurse in the first instance.

 

[grena blade]

That's deemed as one of the most effective DMTs available. Its a monoclonal antibody and works by targeting B cells in the lymph nodes. Its these cells that mistakenly target the myelin sheath. Hope it is working for you. Any concerns speak to your MS Nurse in the first instance.

The great thing also it's easy to administer and touch wood no side effects

 

[fifty shades of blade]

just for awareness, Dr Giovanonni who is a now retired MS expert neuro, worked primarily at Barts and London, has a great website which covers so many aspects of MS treatments, news and more.https://gavingiovannoni.substack.com/

 

[SwitchBLADE Smiles]

Morning kids - apologies if this isn’t permitted on the forum, but I’m looking to drum up a little bit of support in aid of the MS Society.

In July last year, my partner (33 at the time) complained of having numbness in her feet after coming home from work. As irritating as it must have been, we kind of brushed it off hoping it would be fine the next day. It wasn’t and if anything it was getting worse.

Several hundred phone calls to the GP (just to get through to them…) a conversation with 111 and an A&E visit to Derby resulted in nothing but more confusion and frustration with nobody seemingly willing to hear what she had to say - we were sent home with blood thinners…

A week went by and the numbness got worse, seemingly travelling up her legs. Back to A&E we go, but this time a different hospital. 5 weeks, 2 MRI scans and a lumbar puncture later (that was difficult to watch… can’t imagine what it must feel like!) - a confirmed diagnosis of Multiple Sclerosis was made.

For those who don’t know what MS is, in short - MS is a condition where the body’s immune system attacks itself. Specifically a protective layer that surrounds your spinal cord called the myelin sheath. Eventually, it will be damaged resulting in scarring (Sclerosis in medical terms).

The scarring slows signals sent by the brain down the nerve motorway of the body (spinal cord) resulting in various symptoms such as numbness.

Anyway, on Saturday - my partner, the kids and I will be participating in a 5k MS walk to raise funds for the MS Society. We would massively appreciate it if any donations could be made, no matter how small - every penny can make a difference.

Burcu's fundraiser for Multiple Sclerosis Society

Help Burcu Bay raise money to support Multiple Sclerosis Society

www.justgiving.com

Again, apologies if this is against forum rules. I have almost certainly not put it in the correct area, but just wanted as many eyes on as possible

Cheers,

Switch x

Afternoon all, rather than making a new post thought I’d revive the old thread.

Almost a year on from the last fundraiser, the Mrs and I are at it again. This time, rather than going for a 5k walk in Birmingham we’re going for a slightly longer one… 100k throughout May! Luckily we’re not doing it all in one go, but will be over a series of days when we get the chance outside of work / kids related activities.

I suspect that the treatment she’s receiving for MS is impacting her decision making as I’m getting tired just thinking about it, however it’s clearly doing the business at more important things as her condition has remained in situ since starting treatment 18 months ago! The team down in QMC Nottingham have been absolutely fabulous and our consultant neurologist is first class. We feel very lucky indeed to have them on side.

As before, absolutely no pressure to contribute whatsoever, however any donations for the cause would be massively appreciated.

Please Support My 100km Challenge to Leave MS Behind!

I'm taking part in The May 50K to support research into multiple sclerosis and create better access to treatments.

www.themay50k.co.uk

Cheers,

Switch x

 

[Grey Blade]

Afternoon all, rather than making a new post thought I’d revive the old thread.

Almost a year on from the last fundraiser, the Mrs and I are at it again. This time, rather than going for a 5k walk in Birmingham we’re going for a slightly longer one… 100k throughout May! Luckily we’re not doing it all in one go, but will be over a series of days when we get the chance outside of work / kids related activities.

I suspect that the treatment she’s receiving for MS is impacting her decision making as I’m getting tired just thinking about it, however it’s clearly doing the business at more important things as her condition has remained in situ since starting treatment 18 months ago! The team down in QMC Nottingham have been absolutely fabulous and our consultant neurologist is first class. We feel very lucky indeed to have them on side.

As before, absolutely no pressure to contribute whatsoever, however any donations for the cause would be massively appreciated.

Please Support My 100km Challenge to Leave MS Behind!

I'm taking part in The May 50K to support research into multiple sclerosis and create better access to treatments.

www.themay50k.co.uk

Cheers,

Switch x

Anyone wishing to donate click on registration (below main header) and this will save you lots of time trying to work out what you've done wrong!