Front page of board

[someone33]

I have to known something. Why do you have a video of someone unable to walk on the front page of this board. I went through a very dark 6-8 months when I was first diagnosed. I thought that was going to be me in 2-3 years.

I started drinking again, worked 60 hours a week to save up money to meet every single musician I’d ever had a crush on, and basically almost destroyed my marriage. I feel like showing that plays into the negative view people already have of us.

I’m not trying to offend anyone, but I’m generally curious as to why you also don’t have someone running, swimming, skating, etc.

[KoKo]

I have to known something. Why do you have a video of someone unable to walk on the front page of this board. I went through a very dark 6-8 months when I was first diagnosed. I thought that was going to be me in 2-3 years.

I started drinking again, worked 60 hours a week to save up money to meet every single musician I’d ever had a crush on, and basically almost destroyed my marriage. I feel like showing that plays into the negative view people already have of us.

I’m not trying to offend anyone, but I’m generally curious as to why you also don’t have someone running, swimming, skating, etc.

Hello someone33

Thank you for your question.
.
Featured in the video that you refer to is our dear founder of MSWorld, Kathleen (Kat) Wilson.

(Founded in 1996, MSWorld has grown from 6 people in a chat room, to the largest all volunteer patient run organization world wide. Our motto is Wellness is a State of Mind.)

If you have anymore questions, please feel free to ask.

Wishing you the best!

[someone33]

I get what you are saying. My point is, why help play into the negative view that society has of us? I don’t think I could live like that, and if I thought that was where I was going to be soon I would probably be back to drinking and popping pills.

I just think there should be something that shows that people with this disease can lead 100% normal lives.

[oceanpride]

I’m pretty sure, as far as I’m concerned , a picture of someone 100% not affected by the ravages of MS doesn’t paint the true picture for the rest of us. The rest of us should be inspiration for you ,that you can have a fulfilling life full of joy and blessings, even if your coarse takes a turn for the worst. It’s called support. I’m sorry ...you did offend me a little bit. Almost as much as some of the chronicle healthy people that I know do from time to time. You probably don’t want to be where I’m at right now so my advice to you would be lay off the pills and alcohol and look after yourself. You have much to inspire for a lot of people on here as well. You offer hope that maybe ,just maybe their coarse will be like yours. Take care.

[someone33]

As I said I’m not trying to offend anyone. But why not have both? Why not show the world that this disease doesn’t do that to everyone? Society already looks down on people with this, as sad as that is.

I think I stated I went through a 6 month alcohol and pill binge. I finally stopped the drinking and only take what I need to sleep. Also thankful I live in Colorado.

I’m not going to go down the discussion of would my life be fulfilling if I couldn’t do xyz. I’ve been there and it leads to bad places and I’m not looking to go back.

[pennstater]

Society already looks down on people with this, as sad as that is.

I think I stated I went through a 6 month alcohol and pill binge. I finally stopped the drinking and only take what I need to sleep. Also thankful I live in Colorado.

I am sorry that is your experience, but I have yet to meet anyone who looked down on me for having MS. I have experienced the exact opposite - people who were supportive and encouraging, impressed by what I accomplished despite having MS.

If you haven't, you may want to consider therapy to accept your diagnosis and help you make peace with it, as well as give you tools should you need to adapt to a life with MS. I would hate to see you turn back to alcohol and pills the minute you hit a bump in the road. You may never hit that bump and hopefully you don't, but you want to be in a better mindset if you do. I did following diagnosis and it helped tremendously.

That being said, I hope you have luck with the DMT you are on, but there are more on the market with higher efficacy rates at preventing relapses. They all have pros/cons, but if your biggest fear is future disability of any kind, I would hit it harder. Just my opinion.

[someone33]

An old coworker got fired for having this. They claimed it was something else, but before this she had just been promoted, had never been in trouble, and everyone loved her. After she “came out” pretty much everyone talked about her and said the most nasty things. The thing was she wasn’t having any issues at all. She had an initial hospital visit, but was completely fine.

I stayed out of their conversations since the one person who did try to defend her was told to lighten up and “it’s funny because it’s true.”

I’ve decided I’m going to live life as if I don’t have this disease and as long as I’m not progressing I’m fine. I’d rather live for 10-15 years and be happy vs living for 30 plus years and be bitter and miserable every day. All the things I would have to give up is a big nope from me. The bitterness that I had when I tried to live the “super healthy” way almost cost me everything.

I’ve looked at other dmts, but with corona, there is no way at all I’d ever consider one of the stronger ones (since they cause immune suppression)

I’ve discussed in length with my old coworker (she’s the only one who I’ve told besides my husband) she recommended definitely staying quiet. She’s doing pretty much the same as me- living the same way we did before since our life is going to be much shorter than we originally thought. So we are going to make the most of however long We have left.


Only change I made was I stopped smoking cigarettes. Mostly because I thought of how much more money I would have to do all my things I want.

But my biggest problem now is I don’t really have a neurologist since my old one retired and I’m not comfortable going to a hospital with corona raging like it is. Well I guess I have one I saw about 5-6 months ago. I didn’t really like him, but if I need something I could always message him.


I’m still not convinced I really have this, since I’ve never had any issues at all with any of the things they say make them suspect this. If I’m wrong then at least I lived my best life and will have no regrets. I would regret living the way I did for those few months more I think.

Again, I just think people should see that not everyone with this disease needs help waking and some of us can work full time jobs. I think things like the front of the board is what plays into peoples view of this.

[NoraS]

Someone, I'm sorry you've had problems with the people around you. My MS went undiagnosed for 40 years, partly because of bad doctors and partly because I was without insurance for 15 years. I worked full time for 35 of those and then switched to part time for a couple more. I raised my family, drove 75 miles a day for my job, spent nearly a decade looking after a senile grandmother. I mowed a 4-acre yard, planted flowers, walked my large dogs. And now I'm on Disability and sometimes need a cane just to get around my very small house.

MS affects everyone differently. As a progressive disease, it naturally gets worse as time goes by, but not everyone will have the problems I do. I don't use a wheelchair, although I do take advantage of the motorized carts at the grocery store. I've voluntarily given up driving because I don't have as much control as I used to. My life is different now than it was 10, 20, 30 years ago, but it's still a very good life. I haven't had to give up much; I just live a bit differently than before. At 55, I wouldn't act like I was 20 even without the MS, so many of the changes to my life are due to my age, not the illness.

What I see in that video is a happy, upbeat woman who is still able to get around and enjoy life in spite of the fact that she can't walk any more. I think that's the point that's being stressed.

[someone33]

That’ll never be me. I’m going to make the most of however long I have left being independent then I’ll weigh my options. Not going to burden my husband with taking care of me. If someone is happy that way more power to them. Just understand not everyone can be that way.

In 10-20 years I better still be able to drive 12 hours to go to a 3 day rock festival just to drive home and go back to work the next day. The thought of living in a basically permanent corona lockdown (except I can’t work or even take myself to the bathroom) is depressing. And tbh I’m not sure I want to be around for that.

[Mamabug]

As I said I'm not trying to offend anyone. But why not have both? Why not show the world that this disease doesn't do that to everyone

Yeah; not a bad idea to have both. We really vary in how MS affects our health and our mobility.

[palmtree]

I like it! Whoever worked on it did me a very good job. I was a little confused at first but it was a comfort to see the same format for the message board. My plaque riddled brain can’t adjust to change that easily.

[someone33]

Yeah; not a bad idea to have both. We really vary in how MS affects our health and our mobility.

This is exactly my point. Everyone who talked about my ex coworker that had this pretty much said she would be in a wheelchair and bedridden in a few months. They even were talking about who they were going to set her husband up with once she "became a burden" on him. I still find it sad that she ended up quitting because of what they did, but that was above my pay grade....

Honestly, before I was diagnosed with this I thought every single person with it was in a wheel chair and couldn't walk without assistance.

I know not a lot of people come here that don't have this, but this would be a terrifying thing to see for someone newly diagnosed who wasn't told what to expect or what will or will not happen.