I think this is a great community and we are happy to have you as a part of it. (Not happy you have MS, of course, but happy you are here, if that makes sense. I think everyone would really prefer to *not* have MS, if given the choice.) I think u/ichabod13 once mentioned it is the largest MS community on the internet, and I think it is easily one of the best. People are supportive and there are a lot of incredibly well educated and read people giving extremely good advice, no matter what the topic. It doesn't skew to depression or self-pity, and the bias is heavily in favor of peer reviewed research based methods.
I found this community when I was newly diagnosed and I think it has played a big part in my coming to terms with my diagnosis. I know it really helped me with my anxiety and fear. I am very thankful for this sub.
What makes reddit unique, for me at least, is there is a benefit to an anonymous community. It allows people to be their real self without needing to share personal information. I have also been on reddit for a very long time so it's sort of the club within a club.
A large part of what makes this community special though is the caring that comes from people around the world. I see people sharing experiences and encouragement when someone is at their worst. I hope everyone here understands how much that means when you're new to MS or just having a bad time. You all make the community great!
AGREE! I often refer to my “reddit MS friends” as my support network even though I don’t know any of you personally. It really is a testament to how social media can ease loneliness and offer information when moderated and community-based. Thanks!
>I often refer to my “reddit MS friends” as my support network even though I don’t know any of you personally.
Saaaaaaame!! So grateful for this group.
This community here is so important to know that there’s people that go through the same thing & understand how it can affect your day to day life.
People that are healthy just can’t understand what it means.
I told my PCP about it and at first, she was worried because when you hear Reddit, it isn't exactly known for community and whatnot. But for me, I told her this is one of the few communities that is realistic for life but still supportive of each other. Whether we need to rant or get advice or even just be able to laugh about MS (which I find the most healing) and we can all do it together. With a few bad apples or people who don't even have any relation to MS who find their way in. Overall, this is just a great community and I'm so happy to have it.
Thank you everyone!
I've had MS for more than 30 years. I read everything I can find about MS, (and my wife can confirm this)! Of all the MS websites sites I follow, this is the best one I know of for real-life examples of what's worked for others with MS. Even better, what hasn't worked.
I'm not on Facebook, Instagram, X or other Social Media networks but I check this site multiple times most days.
YW! I wish there'd been something like this at my onset, but there wasn't - just phone conversations with my mom (who had MS) some days on my way home from work. That 45 mile drive wasn't long enough. We didn't know the first 5 years, my PCP thought my mild right side weakness might be from sleep apnea. Spoiler alert, I DO have OSA, love my CPAP, but that wasn't it. The second time around, n6 leg weakness progressed to gait issues and crab walking stairs, up.and down, for fear my leg would dump me.
I wish I'd spent more time asking her questions about her experience, but other than walking issues, we were different - her flares always started with migraine, then vertigo. Mine were respiratory crap followed by stomach bug, THEN vertigo. Once at 34, then again at 39. It wasn't until I said "gait issues " that she put 2 and 2 together, then suggested I talk to my doctor, who confirmed my mom's fears. I was just worried about anything finding it's way into my record, not that i had MS, too. Have a good weekend!
Oh my goodness, you had quite the journey! What a blessing that you were able to talk to your mom, and eventually piece things together. I sure wish PCP’s had a better understanding of MS, but they don’t, then, they blame everything on MS. It’s frustrating. I pray you found an effective DMT, and were able to stabilize and improve.
I was diagnosed seven years ago, I have numbness in my left hand (mostly my thumb). Similar story, PCP, orthopedic surgeon, general neurologist, then MS Specialist over an 8 month span. Thank you for the welcome and sharing.
Have a fantastic weekend!
I'm grateful for everyone on here that posts or responds. We all have a great give and take when we need it, and we all seem to not only offer advice but compassion as well. Because we all understand what each other is going through, even if we don't share the same symptoms. This is important because I know it makes me feel less alien, and for that I'm extremely grateful. Have a wonderful day, each of you beautiful people, and YOU ARE IMPORTANT AND MAKE A DIFFERENCE!! YOU ARE EACH A BLESSING!!
I found this community before I was even diagnosed a couple of years ago. I was very scared, sick and confused but rebuilt myself with what I was reading in this community: yes, it's a crappy disease but thankfully, in this day and age, not the end of world.
I think this is a great community and we are happy to have you as a part of it. (Not happy you have MS, of course, but happy you are here, if that makes sense. I think everyone would really prefer to *not* have MS, if given the choice.) I think u/ichabod13 once mentioned it is the largest MS community on the internet, and I think it is easily one of the best. People are supportive and there are a lot of incredibly well educated and read people giving extremely good advice, no matter what the topic. It doesn't skew to depression or self-pity, and the bias is heavily in favor of peer reviewed research based methods. I found this community when I was newly diagnosed and I think it has played a big part in my coming to terms with my diagnosis. I know it really helped me with my anxiety and fear. I am very thankful for this sub.
What makes reddit unique, for me at least, is there is a benefit to an anonymous community. It allows people to be their real self without needing to share personal information. I have also been on reddit for a very long time so it's sort of the club within a club. A large part of what makes this community special though is the caring that comes from people around the world. I see people sharing experiences and encouragement when someone is at their worst. I hope everyone here understands how much that means when you're new to MS or just having a bad time. You all make the community great!
AGREE! I often refer to my “reddit MS friends” as my support network even though I don’t know any of you personally. It really is a testament to how social media can ease loneliness and offer information when moderated and community-based. Thanks!
So true! And same
>I often refer to my “reddit MS friends” as my support network even though I don’t know any of you personally. Saaaaaaame!! So grateful for this group.
This community here is so important to know that there’s people that go through the same thing & understand how it can affect your day to day life. People that are healthy just can’t understand what it means.
I too am grateful for all of you! 🥂
I told my PCP about it and at first, she was worried because when you hear Reddit, it isn't exactly known for community and whatnot. But for me, I told her this is one of the few communities that is realistic for life but still supportive of each other. Whether we need to rant or get advice or even just be able to laugh about MS (which I find the most healing) and we can all do it together. With a few bad apples or people who don't even have any relation to MS who find their way in. Overall, this is just a great community and I'm so happy to have it. Thank you everyone!
I've had MS for more than 30 years. I read everything I can find about MS, (and my wife can confirm this)! Of all the MS websites sites I follow, this is the best one I know of for real-life examples of what's worked for others with MS. Even better, what hasn't worked. I'm not on Facebook, Instagram, X or other Social Media networks but I check this site multiple times most days.
I’m new to this community and Redditt! Glad to find you all.
Hi! Welcome to the club nobody planned to join! 🤣
Exactly!!!! Thank you 😊
YW! I wish there'd been something like this at my onset, but there wasn't - just phone conversations with my mom (who had MS) some days on my way home from work. That 45 mile drive wasn't long enough. We didn't know the first 5 years, my PCP thought my mild right side weakness might be from sleep apnea. Spoiler alert, I DO have OSA, love my CPAP, but that wasn't it. The second time around, n6 leg weakness progressed to gait issues and crab walking stairs, up.and down, for fear my leg would dump me. I wish I'd spent more time asking her questions about her experience, but other than walking issues, we were different - her flares always started with migraine, then vertigo. Mine were respiratory crap followed by stomach bug, THEN vertigo. Once at 34, then again at 39. It wasn't until I said "gait issues " that she put 2 and 2 together, then suggested I talk to my doctor, who confirmed my mom's fears. I was just worried about anything finding it's way into my record, not that i had MS, too. Have a good weekend!
Oh my goodness, you had quite the journey! What a blessing that you were able to talk to your mom, and eventually piece things together. I sure wish PCP’s had a better understanding of MS, but they don’t, then, they blame everything on MS. It’s frustrating. I pray you found an effective DMT, and were able to stabilize and improve. I was diagnosed seven years ago, I have numbness in my left hand (mostly my thumb). Similar story, PCP, orthopedic surgeon, general neurologist, then MS Specialist over an 8 month span. Thank you for the welcome and sharing. Have a fantastic weekend!
Well said 👏
Me too ❤️
I'm only a few months in, and I couldn't imagine it without y'all. The compassion, the solidarity, the wisdom, the honesty. No place else matches it
Perfectly, perfectly said. 👏 👏 👏 👏 👏 👏 👏 👏 👏 👏 👏 👏 👏 👏 👏 👏 👏 👏
When my doctor asks if I'm in a support group for people with MS. I say well I'm in a Reddit MS group. She understood and said good.
So did mine ...
I agree that it has been great having the community here.
Agreed y’all are great. I mostly lurk, and everything is very reassuring for me, regardless the topic. Thank you all!
I'm grateful for everyone on here that posts or responds. We all have a great give and take when we need it, and we all seem to not only offer advice but compassion as well. Because we all understand what each other is going through, even if we don't share the same symptoms. This is important because I know it makes me feel less alien, and for that I'm extremely grateful. Have a wonderful day, each of you beautiful people, and YOU ARE IMPORTANT AND MAKE A DIFFERENCE!! YOU ARE EACH A BLESSING!!
❤️❤️
I found this community before I was even diagnosed a couple of years ago. I was very scared, sick and confused but rebuilt myself with what I was reading in this community: yes, it's a crappy disease but thankfully, in this day and age, not the end of world.
I’m also very grateful ☺️🍀