Where I get My Info
When you're newly-diagnosed, it's a lot to take in. But, if you're like me, you'll want to research the hell out of it! So here are some reputable websites that I've found useful for certain things. This is NOT an exhaustive list but they have been helpful to me. You'll likely have your own that you can add to this list.
Newly-diagnosed
MS Trust
The MS Trust have a great webpage for newly-diagnosed people, divided into some critical areas. If you sign up to to their Facebook page, you can get the latest research data that's in a quick, digestible format.
Ms Society
The MS Society has a brilliant helpline to deal with all kinds of issues. There is also a really supportive community via the forums and via local groups. I use/d this mainly for better understanding my symptoms and for the online forums.
Both of these websites have a variety of free publications. Printed copies are usually available in the hospital waiting rooms when you go for your appointments with your neurologist or MS nurse. If you can't wait, you can download them for free. They also have regular magazines, full of useful information and interesting people.
MS-UK
These guys also have a magazine, where the focus is definitely on the people and on everyday life. A fairly new, but profoundly useful, part of their offering is counselling for MSers.
Disease Modifying Drugs
Sadly, NICE recently gave notice of its decision to withdraw support of certain established MS drugs, not because of their efficacy, but because they are apparently not cost-effective. There have been some strongly-worded replies but until we know more, the MS Decisions website is really helpful in wading trough the variety of drugs on offer.
Belonging
I tend to use some support groups on Facebook to help me. There's a great one for mums and quite a few for each of the disease modifying drugs. They help me feel normal, and we spend some of the time talking about the MS but a good share of the time talking about life.
There is also the fab Shift MS. A community of 13,000 MSers from across the world, but mostly the UK. They have a lovely online community and a series of excellent short videos on a variety of hot MS topics with lots of experts. You may even spot a certain someone in the future!
When you're ready to really delve into your MS
Now for the Science bit! The bit I only understand 30% of but which I couldn't do without.
The Barts MS blog is brilliant, humorous in parts, scientific in others. All with lots of juicy information from the scientists' point of view that give you an insight into what is going on in their community, what they're excited about or frankly, a bit miffed about. Sometimes, they partner via UCL Partners and hold a research day for MSers which is absolutely brilliant and massively over-subscribed - please may we have one in 2018, docs?
I get regular updates from Multiple Sclerosis News Today and they deal with everything from research to living with MS, and they're keen to point out that they don't give advice.
Where my son gets his info from
Apart from me, he has also been to Digesting Science, a fantastic workshop for families where the children are young and at least one parent has MS. There are a few activities and each activity has a guide who teases out information from the children so they can ask questions.
Apologies if I've left anyone out, I'm still learning myself!
Newly-diagnosed
MS Trust
The MS Trust have a great webpage for newly-diagnosed people, divided into some critical areas. If you sign up to to their Facebook page, you can get the latest research data that's in a quick, digestible format.
Ms Society
The MS Society has a brilliant helpline to deal with all kinds of issues. There is also a really supportive community via the forums and via local groups. I use/d this mainly for better understanding my symptoms and for the online forums.
Both of these websites have a variety of free publications. Printed copies are usually available in the hospital waiting rooms when you go for your appointments with your neurologist or MS nurse. If you can't wait, you can download them for free. They also have regular magazines, full of useful information and interesting people.
MS-UK
These guys also have a magazine, where the focus is definitely on the people and on everyday life. A fairly new, but profoundly useful, part of their offering is counselling for MSers.
Disease Modifying Drugs
Sadly, NICE recently gave notice of its decision to withdraw support of certain established MS drugs, not because of their efficacy, but because they are apparently not cost-effective. There have been some strongly-worded replies but until we know more, the MS Decisions website is really helpful in wading trough the variety of drugs on offer.
Belonging
I tend to use some support groups on Facebook to help me. There's a great one for mums and quite a few for each of the disease modifying drugs. They help me feel normal, and we spend some of the time talking about the MS but a good share of the time talking about life.
There is also the fab Shift MS. A community of 13,000 MSers from across the world, but mostly the UK. They have a lovely online community and a series of excellent short videos on a variety of hot MS topics with lots of experts. You may even spot a certain someone in the future!
When you're ready to really delve into your MS
Now for the Science bit! The bit I only understand 30% of but which I couldn't do without.
The Barts MS blog is brilliant, humorous in parts, scientific in others. All with lots of juicy information from the scientists' point of view that give you an insight into what is going on in their community, what they're excited about or frankly, a bit miffed about. Sometimes, they partner via UCL Partners and hold a research day for MSers which is absolutely brilliant and massively over-subscribed - please may we have one in 2018, docs?
I get regular updates from Multiple Sclerosis News Today and they deal with everything from research to living with MS, and they're keen to point out that they don't give advice.
Where my son gets his info from
Apart from me, he has also been to Digesting Science, a fantastic workshop for families where the children are young and at least one parent has MS. There are a few activities and each activity has a guide who teases out information from the children so they can ask questions.
Apologies if I've left anyone out, I'm still learning myself!
