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 :-/
I read this recently and thought it describes MS in a really good way. If you owned a home and one day you noticed the kitchen light didn’t come on as quickly as normal, or would periodically flicker but, then one day it came on and was fine. Then two days later you noticed the living room light didn’t come on when you flipped the switch the first time, but after several attempts it seemed fine. Then the kitchen light didn’t work again, and the door bell didn’t always work. Over a period of time you notice that all the electrical outlets seemed “hinky” and not quite right. After several months or years you realize that all things electrical in your home just weren’t working the way they were when you first moved in or had the house built.
...
So finally you call an electrician and he discovers that mice have gotten in you your walls and chewed at all the wiring; little bites here and there. Some wires were completely bitten through leading to this or that outlet to be completely useless. Other wires just had little bites leading to intermittent usage, sometimes they work and sometimes they don’t. And other wires were not affected at all.
So you call an exterminator and he gets rid of the mice and then you have the electrician rewire your home and everything is good and working again.
With MS the house is your body and the electrical wires are the nerves that go from your brain to the various parts of your body and the mice are your immune system.
There are drugs that can help stop the immune system from attacking the nerves and causing MORE damage, but whatever damage is done, you have to learn to live with. There is no way to rewire the system.
We have to have patience for people living with MS, because they are never quite sure when the outlets (arms, legs, eyes, ears etc) are going to work properly and when they are not. Imagine for a moment living in a house and never knowing for sure which electrical outlets worked and which did not. Imagine having the television quit or get messed up in the middle of your favorite show, or all the lights flicker or go out for no apparent reason. Imagine the frustration of knowing there is no cure, no rewiring, and no way of knowing when things will work properly and when they will not. Imagine the house looks fine, perfectly normal. Every individual outlet functions perfectly on its own and if there were a way to rewire them they would be perfectly normal. But there is no way to rewire them and they are stuck living in this home, their bodies, with all the broken wires, hoping and praying that no further damage will be done
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.
