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.
Sorry to bug you all with my rubbish but hopefully you don't mind! Hope you are well and life's treating you kindly.
Firstly, my doctors are driving me insane. Firstly they've taken two years to get to the point where I am diagnosed... I think?! Lol they told me over the phone. But have done nothing about it. So I call my doctor today as my eyes are playing up, last week it was my face its constantly my legs and I dunno maybe my patience is a bit short. I've lost my job recently due to being forgetful and tired. . Yeah. And he says to me "maybe you need to see your neurologist, there's not a great deal we can do" surely they can't just do that? I'm just kinda left to deal with this no help no pain relief nothing?
OK so then I call my sister to tell her and she tells me that I'm making a fuss over nothing... I just need to get out more and I'm basically crazy.
I have blown my fuse. What is up with people? My eyes are flashing my legs feel like they are made of flaming concrete... and there's nothing anyone can do and I'm crazy??? Really.
Sorry for the rant I just can't get my head around small minded idiots. I can't cope with this on my own. I went to sleep last night hoping I wouldn't wake. I got kids I can't feel so stupidly all the time. Has anyone else had these issues with Drs? Thank you& sorry for wasting your time. Just don't know where else to turn.
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.
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