Morning, I’ve just joined this forum after being diagnosed over 7 years ago with RRMS. I want to reach out and find some people who really understand my struggles to talk to as friends and family are amazingly supportive but still don’t truly understand. Can anyone help me how I can do this on here or anyone reach out in the same sort of position? Many thanks, Tom
Hello Woody
Welcome to the forum.
How this usually works is you start a new thread with a relevant title. Then write a question or a statement that you either want help with, or just want to talk about. Interested people will then respond to you. Sometimes you don’t get much of a response. Try not to take that personally, just try again with something different or explain yourself more fully.
We are generally a friendly bunch. Our shared MS is what we start out with on here, but you can soon see that we all differ. We run the gamut of diagnoses, from CIS or undiagnosed worried, to RR, SP and PPMS. Some have been diagnosed a few days or months, others for many years. Some of us take disease modifying drugs and others don’t. Some are relatively able bodied and others very disabled.
Some people are very knowledgeable about their own MS, others less so. What we generally share I believe is understanding of the difficulties we face with MS regardless of our differences.
We try not to be judgemental or to patronise each other. Being kind or beneficent is, I think, a generally accepted stance amongst us.
Sue
3 Likes
Hi Woody,
This is a great place to share knowledge, experience with people who understand and empathise.
Mick
1 Like
Hi Woody,
Sorry about the diagnosis but welcome to the forum.
Sue gave good instructions on how to post new topics/threads.
Top right is a search box too. Lots of useful info there.
My top tip-keep a record off all your symptoms and how long they last, medical appointments and their outcome.
All evidence if you need to apply for a blue badge, PIP etc.
Take care,
Jen
1 Like
Hi Woody, glad you found your way here to folk who really get it.
I have had Spinal PPMS for 23 years ie no brain lesions just cervical and thoracic ones. They say it`s rarer.
keep the faith!
Boudsx
Hi, I’ve only just realised you responded to my message. I’m so sorry to hear your rare position and thank you for sharing. I do hope you’re keeping well?
Thank you so much Sue for the response and the advice. I’ve only just realised people have responded. I hope you’re keeping well yourself?
Thank you, this is what I’m looking for as I have a lot of support with family but nobody understands like people in the same sort of position. I hope you’re keeping well
Thanks for the response and the advice and support. I’m very grateful. Hope you’re well?
Hi Woody, i`m doing ok just now thankyou.
Fed up of lockdown, but who isnt?
The death rate is slowing a bit, as people get vaccinated, so lets hope we can see light at the end of the tunnel this month.
Boudsx
Good morning woody. A Guthrie fan I wonder? Don’t actually know much woody Guthrie, but he was referenced by Bob Dylan, who of course is a genius. I waffle on. Hope this Monday finds you fit and well, even if the days all meld into one. I think it’s Monday
Hi Slug, yes it is Monday. And up here a very nice one. Blue sky and sunshine. A little cool but