Miss you all

[palmtree]

This site was bustling with spontaneous posts and information in 2010 when I was first diagnosed. It was so helpful to me then.

I wish I had the answer as to why there are so few posts now. The other sites I have looked at are so full of nutty things that I think
the newly diagnosed need a place to go where they can learn first hand other’s experience with MS.

The information I learned armed me with what to expect and it has come in handy many times. The ignorant things others can say or do is astonishing.

I am just posting because I’m on steroids.

[Chirpy]

Yeah, I havent been on for a while (since the remodel! I used to play the games when I couldn't sleep, so saw posts then).. but i had a specific question last night and popped on.. I saw "topic of the month" was from last June, and am wondering "what happened to all the people?". I was just guessing covid disruption??

[palmtree]

Nice to read your post. If there is anything I can do to help get the spark back in our threads I am happy to do it.

I don’t really think this is directly related to Covid. This has been a trend for the past five years. Possibly because of the polemica in politics since 2016. Everyone is walking on eggshells.

the new site layout is beautiful and very organized. But my hunch is that it might e stifling spontaneity. Facebook is more spontaneous but it is not something I enjoy.

I really think there should be more encouragement to vent in a non judgmental atmosphere. A lot of love usually comes back. When everyone is constantly self monitoring everything we say so as to not sound like self pity or failure we lose some of that.

[loopey]

Me too. I have been helped so much from this site and have been sorry to see so few posts.

[NoraS]

There seem to be some very nice people on this site, but I avoid it in general because no one seems able to express themselves honestly. A new person asks questions about "Could this be MS?", and the standard response is "You really need to ask a doctor." I understand that we're not diagnosticians, but a simple answer based on your personal experience would be extremely helpful.

I'm also turned off by the extreme focus on new meds and extensive exercise. Where are the posts about everyday life? The problems getting in and out of the tub or walking the dog. The humor when your eyes blur and you heat a can of soup only to discover that you opened a can of peaches instead. Surely I'm not the only one who uses aspirin, Icy-Hot, and hot water bottles for minor pain and discomfort. The only one who has to sit on the toilet seat to get my legs into my jeans.

As someone who wasn't here 5 or 10 years ago, I just see this as a site that's primarily focused on touting the benefits of various drugs, and that's just not for me.

[Mamabug]

There seem to be some very nice people on this site, but I avoid it in general because no one seems able to express themselves honestly. A new person asks questions about "Could this be MS?", and the standard response is "You really need to ask a doctor." I understand that we're not diagnosticians, but a simple answer based on your personal experience would be extremely helpful.

I'm also turned off by the extreme focus on new meds and extensive exercise. Where are the posts about everyday life? The problems getting in and out of the tub or walking the dog. The humor when your eyes blur and you heat a can of soup only to discover that you opened a can of peaches instead. Surely I'm not the only one who uses aspirin, Icy-Hot, and hot water bottles for minor pain and discomfort. The only one who has to sit on the toilet seat to get my legs into my jeans.

As someone who wasn't here 5 or 10 years ago, I just see this as a site that's primarily focused on touting the benefits of various drugs, and that's just not for me.

I'm sorry that we don't seem to be meeting your needs. I would also love to read more posts about personal experiences and everyday life. Please feel free to begin posting more of those types of threads. I suspect that others might love to read about them too, and it might encourage more members to make those kinds of posts.

I don't apologize, at all, , however, for encouraging questioners to see a doctor when asking "Could this be MS"?. My personal experience is that MS is very difficult to diagnose, even for neuros and even for the many multiple specialists that I saw over a two-week visit with daily appointments at Mayo Clinic. It took almost two years for my dx, even after 7 MRI's, many (many, many, many ...) other tests, and 2 incorrect "probable" dx by highly qualified doctors. There is absolutely no way that my personal experience could offer a guess that's worth even a parting glance. Mayo clinic gave me one of the incorrect "probable dx"; If Mayo Clinic couldn't dx me, I'm not going to venture a guess about whether someone else *might* have MS.

Although there is some focus on meds, many of us believe that DMD's (meds) are one important strategy for managing our MS. Many of us also experience side effects of meds that we want to ask about or read about. That is part of what we are here for.

Some of us also believe that moderate but regular exercise is another important strategy. I really did have to laugh at your phrase "extensive exercise".

It appears that you have not read our weekly goalposters threads. Our "extensive exercise" often includes babysitting grandkids and walking a few laps, indoors, around the house. Our focus is simply on continuing to move, not on extensive exercise. Setting goals and reporting them to each other weekly seems to help to motivate those of us who are there -- to continue moving. I very definitely notice that, when my exercise disappears, my progression quickens.

I'd love for more of you to join us!!

[502E79]

Nice to read your post. If there is anything I can do to help get the spark back in our threads I am happy to do it.

I don’t really think this is directly related to Covid. This has been a trend for the past five years. Possibly because of the polemica in politics since 2016. Everyone is walking on eggshells.

the new site layout is beautiful and very organized. But my hunch is that it might e stifling spontaneity. Facebook is more spontaneous but it is not something I enjoy.

I really think there should be more encouragement to vent in a non judgmental atmosphere. A lot of love usually comes back. When everyone is constantly self monitoring everything we say so as to not sound like self pity or failure we lose some of that.

Hi Palmtree!

Thanks for your thread. Glad to add a few cents when I feel helpful. Many of us avoid topics that are not in our wheelhouse.

At 10+ years now a member I've got to say that as a group, facing this stumbling block (sorry!), we're pretty well versed, non judgmental & encouraging. And I like that I monitor what I say. I don't want to sound full of self pity knowing my problems aren't near as bad as others. Reading a heartfelt post makes me think and then respond thoughtfully.

Don't mind sharing my failures either. You have to laugh, our lives can be a comic tragedy if it's anything.

[502E79]

There seem to be some very nice people on this site, but I avoid it in general because no one seems able to express themselves honestly. A new person asks questions about "Could this be MS?", and the standard response is "You really need to ask a doctor." I understand that we're not diagnosticians, but a simple answer based on your personal experience would be extremely helpful.

I'm also turned off by the extreme focus on new meds and extensive exercise. Where are the posts about everyday life? The problems getting in and out of the tub or walking the dog. The humor when your eyes blur and you heat a can of soup only to discover that you opened a can of peaches instead. Surely I'm not the only one who uses aspirin, Icy-Hot, and hot water bottles for minor pain and discomfort. The only one who has to sit on the toilet seat to get my legs into my jeans.

As someone who wasn't here 5 or 10 years ago, I just see this as a site that's primarily focused on touting the benefits of various drugs, and that's just not for me.

Hi NoraS,

Agree with your most* of second paragraph. In fact it was a pleasure reading it. Would love more slice of life incidents. As I said above you have to laugh.

As to your opening thoughts regarding no one expressing themselves honestly.... Even you would agree that you should walk that back a tad. Most responders to a thread asking MS questions should and do default to a doctors opinion... and often do... only then give additional personal experiences that may assist the OP.

* Personally do not follow the new meds, if or when it happens then I am sure to know about it.

As for exercise... that's totally in my control. Not one other thing about MS is, so even if I die trying, it was my choice. And by the way, everything Mamabug said with regards to exercise is true.

[Seasha]

I'm also turned off by the extreme focus on new meds and extensive exercise. Where are the posts about everyday life? The problems getting in and out of the tub or walking the dog. The humor when your eyes blur and you heat a can of soup only to discover that you opened a can of peaches instead. Surely I'm not the only one who uses aspirin, Icy-Hot, and hot water bottles for minor pain and discomfort. The only one who has to sit on the toilet seat to get my legs into my jeans.

Hi Nora - you have an excellent idea here! I too would love to see more posts/threads on everyday life. And add humor to that -or tears - whatever we can relate to.

By the way, I, too, can only get my pants on by sitting on the toilet. I use my teeth to open lots of things because my fingers can;t grip anymore. things like that.

And as far as exercise goes- I ran into a n incident recently about doing too much {"excessive" for me} and I posted about it. Very few replied, and that's OK as I wasn;t expecting others to relate to babysitting, but maybe I just needed a little more love and understanding than what I received.

I miss everyone too! And thanks for starting this, palmtree. I was on board in '09 and it was so active, like you said. I think now msworld facebook is very active, but I don't do facebook.

We may be fewer now, but we all have important voices to share!

[Boudreaux]

Be the change that you seek.

[marti]

I'm a lifer on MSWORLD. I've tried a few of the other MS sites but this has always been the best place... easiest to navigate, despite some of the changes. I've met some very important friends here and would hate to lose them. This is such a personal room with the best suggestions and the best listeners. Thanks for all you do.

[Mamabug]

I'm a lifer on MSWORLD. I've tried a few of the other MS sites but this has always been the best place... easiest to navigate, despite some of the changes. I've met some very important friends here and would hate to lose them. This is such a personal room with the best suggestions and the best listeners. Thanks for all you do.

Those are such kind words, Marti. Thank you. I'm a lifer at MSWorld too. I've been here since 2003; 18 years. I see that you joined many years ago too -- slightly less than a year before I did.

[rdmc]

I'm also a long time MSWorld member. It used to be that it was hard to keep up with the front page posts. I'd see one on the front page but not be able to reply at that time, then later when I'd go back in to reply, the thread would be gone from the front page. I think this is the site that moved so fast, that if a poster of a question didn't get a reply because everything was moving so fast, someone would post on the thread BTT (bump to top) and it would go back up in the queue and stay on the front page (I may have this feature mixed up with another forum I've used.)

I've had several theories, over the last few years, as to why it became slower. One is the need for approval of threads slowed things down.
If you'd ask a question, or reply to a post, and then it would take hours to actually get posted to the thread, folks got discouraged about the
slow down, and quit posting. I totally agree with the need for approval, and appreciate all the hard work of the admins, but when there were no admins okaying every post, it went fast because your post or reply was in "real time."

Maybe as some of us got older, and our MS progressed, it was not something you'd want newly diagnosed patients to have to read and
think maybe that will be me. Not a lot of discussions about late stage MS. Those who might have to alter the sentiment of many early diagnosed to "I had MS but it didn't have me, until it did." I know there is a separate forum now for those who may be home bound or whose MS has progressed to the point of keeping us in bed most of the day. But that brings me to my final theory about the slow down.

When we went to the place that we had all the split off forums for one thing or another, the questions are so spread out through the forum that it has discouraged participation. I always used to come on, peruse the General Forum and help out where I could to answer a questions. Now I don't have the stamina to search the off shoot forums for questions I might be able to answer. When you look at some of those forums, there hasn't been a reply for months. In the Progressive forum, there are threads whose "last reply" is old. For instance under the Progessive label, activity on threads goes like this: 1 from this year, 2 from 2020, and before that there are 5 posts from 2019 and then to 2018, which is just an indication to me that a lot of MSWorld folks aren't looking at them either.

Just MHO, I'm sure there are so many things that may be contributing factors. The interesting thing to me is that during the past year, the COVID year, when most people had more time on their hands being at home, you would have thought participation would have skyrocketed, but it doesn't seem like it's altered too much. The admins can correct me if we did have increased usage during "The Year of the COVID".

Hopefully we'll start to come back to some semblance of normal in the not too distant future. One thing a lot of us homebound MSers had an advantage over the non MS community. We were already used to staying at home, and having our social calendar only having doctor appointments on it. With that scenario, we were better prepared

[Seasha]

When we went to the place that we had all the split off forums for one thing or another, the questions are so spread out through the forum that it has discouraged participation. I always used to come on, peruse the General Forum and help out where I could to answer a questions. Now I don't have the stamina to search the off shoot forums for questions I might be able to answer. When you look at some of those forums, there hasn't been a reply for months. In the Progressive forum, there are threads whose "last reply" is old. For instance under the Progessive label, activity on threads goes like this: 1 from this year, 2 from 2020, and before that there are 5 posts from 2019 and then to 2018, which is just an indication to me that a lot of MSWorld folks aren't looking at them either.

Thanks for your input about this, rdmc. I understand what you are saying and it may be a good idea to trim down some forums and sub forums. I can't remember when this was implemented, but you're right in that things are very spread out. We do have the "Latest Activity" feature which puts the latest posts top and center, but other replies to older posts get lost.

I think it might be a good idea for the staff to re-examine the myriad forums/sub-forums and simplify them.
Moderating has been a feature since I joined in '09, so don't know when it started.

Anyway, I'll talk with other admins to see what changes can be made.
Thanks again.
Seasha

[rdmc]

Thanks for your input about this, rdmc. I understand what you are saying and it may be a good idea to trim down some forums and sub forums. I can't remember when this was implemented, but you're right in that things are very spread out. We do have the "Latest Activity" feature which puts the latest posts top and center, but other replies to older posts get lost.

I think it might be a good idea for the staff to re-examine the myriad forums/sub-forums and simplify them.
Moderating has been a feature since I joined in '09, so don't know when it started.

Anyway, I'll talk with other admins to see what changes can be made.
Thanks again.
Seasha

Hi Seasha,
Thanks for the reply.

I was not trying to be critical of the present system.

I know you're not and appreciate your comments

I have tried a couple other forums over the years, but I'm like Goldilocks, this forum fits me "just right." So I will always be blessed it is/was here!!!

So glad it's a good fit for you and others!