Hi there
My name is Mark Cruise and I'm the volunteer manager with the MS Trust.
I wanted to let you know about a few MS specific volunteer roles that we have available at the moment. We need to hear from people who have a lived experience with MS and want to share their knowledge to help us improve our services
Voice Volunteer - use your voice to help us develop future services: https://mstrust.org.uk/get-involved/volunteering/voice-volunteer
Read & Review Volunteer - We need people to read and comment on our information resources and suggest improvements. You might also suggest new topics or ideas for our content team to develop: https://mstrust.org.uk/get-involved/volunteering/read-review-volunteer
If you are interested in either role, or want to know more about volunteering with us - please do get in touch: volunteer@mstrust.org.uk
Hi people,
I was diagnosed with Primary Progressive Multiple Sclerosis on the 22nd Feb 2019. My neurologist believes I may have had it from birth. Can you guys with MS and in particular PPMS give me advice please and 'Problems me and my wife are going to experience with our journey with PPMS'
I am newly diagnosed with ms was diagnosed in November. When diagnosed the only symptoms I had were feelings ( numbness, burning, itching, spiders crawling onme ) But now I have tremors :-/ I am really not happy about these at all. They make me rock like one of those mentally ill people from girl interrupted and my hands shake dreadfully. Some days worse than others but it nearly always happens and the more I try to stop it the worse it gets.
How do people manage when their symptoms become more visual? I'm extremely vain and can't stand the thought of people noticing there is something clearly wrong. :-( I literally do nothing to draw attention to myself ever and can't stand people noticing me at the best of times. I'm not shy I'm very confident just extremely vain. Don't get me wrong I don't for a second think I'm anything special and certainly don't have my head up my own arse it's just I like to look normal and am really struggling with the thought that I would appear anything other than that. People notice I'm dropping things and my hands shake dreadfully, especially lighting a cigarette or trying to text someone.
The whole thing that bothers me is having the disabled ticket. I don't want people to know I don't work properly and in this short space of time it's becoming a not so much invisible ilness for me and it's literally making me turn grey by the second!
What do you's do? How do you cope with the not so invisible parts of this?
Sorry for ranting and appearing to be completely stuck up and like one of those barbie dolls that flick their hair every 2seconds, i swear I'm not I just don't know how else to explain it :-/
Hi I'm new to the forum. I'm wondering if there is anyone of the younger generation out there that has ms. I'm 17 and have had ms for 3 years now and I've never come across with anyone my age and I'd love to be able to talk to someone that can relate
I have just found this forum. It seems great.
I have MS and was diagnosed in 2005. At the moment it's really starting to get me down.
By the way where is the spell checker.
Confidence is something I lost long ago.
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.