Hi everyone, firstly, hope everyones having a good day. My name’s Emma, and I have RRMS, diagnosed back in 2019. I wanted to reach out as I havent really connected with many people with MS, and would really love to. I know nobody with MS, and dont even get to chat to many people on my infusion days, due to usually being the first one in. Have you guys managed to connect with people?
I’ve got 3 acquaintances with MS and I also go along to my local MS movement class where I meet up with others with MS. Try looking at your local MS society and see if they have any classes you might like to join.
Thank you for your reply, much appreciated. I’ve not heard of an MS movement class, I’ll have to look that up.
Hope you are well had RRMS since 2007…I work with a lady with progressive MS - physically she is a lot worse than me.
My father died in 1986 with progressive MS - very few people know MS has hereditary links…but if your parent had MS you are more likely to develop it.
Having said that RRMS has only ever given me numbness. If ever you need to chat to someone you will always get a response here.
Enter your postcode on this link and it will tell you what support is available locally.
Local support | Multiple Sclerosis Society UK (mssociety.org.uk)
Thanks you @whammel , I will try that.
Do you yourself attend any local support groups?
Thank you very much, thats really kind of you
Neither of my parents have MS, but my Gran did. Despite this I knew very little about it before I got diagnosed myself. I guess growing up, I didnt think of it as being bad as she always seemed fine and didnt even need a stick until she was in her late 60’s. I was very naive!
I hope you are keeping well, and thanks again, Em.
I am quite fortunate, for the last decade (until Feb 2022) I have hardly had any episodes. I have a job I enjoy and I do have more days off than I work which is a relief.
Since I got diagnosed I have tried to not worry about the future, I just go week by week and enjoy life.
Take care and message here anytime. I try to log in each day.
No, but I have done in the past and some were more useful than others. The best ones by far were organised on this site and fortunate to have met some lovely people this way.
I think shift.ms might still be arranging social meetings and worth checking out.
Shift.ms - Learn about multiple sclerosis and connect with other MSers
Hi emma. I’m new to all this as well. I know no one with MS and have only just recnetly logged into these forums. I was diagnosed in 2018 but they atill dont know if i am RRMS or PPMS.
I havent reached out to any local things yet. Only just starting in here to meet some nice people x
Wow, I didnt even realise that the different forms of MS could be that difficult to diagnose, that you still dont know what type you have. Does that mean that you have not yet been offered a DMT?
Lovely meeting you on here, thanks for reaching out! I have only tried a few forums, but for some reason have just found that there hasnt been much interaction/communication. Here seems to be different though already
@Tarka2022 thats fantastic, and I hope that continues for you.
Yes, trying not to worry too much about the future is something I need to stop myself from doing. I certainly dont let MS stop me doing what I want, and in fact am pushing myself so much more… but I’m definitely a worry wart.
Thank you so much, really appreciate that. X
Sometimes just talking helps …it took a while to get registered here, I had to try a new email address as they would not verify my posts on my other account …
Im looking forward to 3 days off now …then a 4 day stint at work. I asked my manager to adjust things at work, which ought make work a little easier.
Hi there, I am 27 from the US and have no friends or know anyone with MS.
Have you been diagnosed for long? Feel free to chat any time, Im in a similar boat. I do have good friends thankfully, but none with a chronic illness, and ive stopped talking about my MS really as I feel theyre getting bored with me!
I am from the UK but my husband and I have always called the US home funilly enough. We were always pulled there, travelled there years ago and have holidayed there a lot. Its killing us now we are not allowed to go. Where abouts are you from?
Welcome to the forum x. I am now in the process of being diagnosed with MS I believe. I am still hoping it can be anything else but I have had all the MRI’s and had a spinal tap which shows possibility of MS but I am going to choose gleeful optimism! I don’t know anyone personally with MS but know people who know someone and tbh it is better to talk to others with MS yourself. I try not to speak about it only because most of the time people assume its a one way ticket to a wheelchair or they take a look at you and say ‘oh you look fine-nothigns wrong with you’…which kinda annoys me more…lol.
I have found this forum really supportive and a safe space to talk. There is something calming knowing the other person you are communicating with actually understands what you are saying.
I hope you are well and I am always available to chat…given the kids don’t melt my brain by the end of the day lol.
Any time you need to chat or just have a vent - post on here, people will always reply.
I didnt realise this either. i think im very early in diagnosis stage and while they are pretty sure its relapsing they arent certain until i get a relapse.
I hope you get some answers soon. It must be frustrating waiting for a diagnosis. It was different in my situation as long atory short, I ended up in A&E, stayed in hospital for 4 days and they did all tests while I was there. I got my diagnosis on the 4th day.
Yes, it is completely different talking with someone that underatands what you are going through/your symptoms etc. I find that when you talk about something youre going through, (just say for eample fatigue) with anyone else, another common reply I seem to get is ‘yea I get that aswell, I feel tired all the time’.
I am well thanks, I hope you are too, and that the kids dont drive you too mad
Ah, ok. MS is such a complex illnes isn’t it? I hope you aren’t suffering too much with any symptoms. If ever you need to chat, or if theres anything youre wondering about with it being so early on for you, feel free to message me.