How is this possible?

[palmtree]

This is wonderful to hear! When I was diagnosed we had to show that the ABC drugs weren’t working before attacking MS full throttle.

I wanted to go on Tysabri right away because when I was diagnosed I could still do all the normal things like enjoy a good half mile swim every day. A major flare with three giant plaques took me to a place of no return.

You and your doctor did exactly the right thing. Your experience is testimony to what is possible now. When someone writes a post like this and they profess to have found ‘just the right diet’, I worry. And my fears have been realized.

[Marco]

My my question is how is this even possible? Is this what RRMS is like? I have a disease but I feel perfectly normal, I know and read about others here with some hard problems but I will consider myself super lucky, and be grateful I’m healthy. I’m always thinking, how long can this last? Will I be relatively unaffected by MS for the majority of my life? Is that even realistic?!

Im confused...

A few comments:
First, I am glad that you have been stable with almost no residual damage. That's wonderful.


Welcome to RRMS, where you have relapses followed by a period of remission. How long will you remain in remission is the great unknown. Some rare patients never have another documented flare up. Others spend years in remission, but many people have a more active disease course.

Are disease modifying drugs are designed with the hope of extending the periods of remission. In fact, as our medications have become more effective the disease treatment goal has been changed. (This is true for some neurologists and some patients. Others continue to follow an older pattern of thought). Today, the ultimate treatment goal should be NEDA.

No evidence of disease activity (NEDA), also referred to as freedom from disease activity, is a new goal that is emerging in multiple sclerosis treatment. The aim is to treat people with relapsing remitting MS (RRMS) with disease modifying drugs (DMDs) to reach a point where they are having: no relapses.

So it's becoming more common for patients on DMDs to have prolonged periods of remission, especially with newer and more efficacious medications.

During the tecfidera trials it was determined that the average MS patient would have a flare up every 13 months and have residual damage every other flare up. Those are troubling numbers and why the NMSS, and many others strongly recommend going on treatment.

There are a few obvious things you can do to try and prolong your remission:
- maintain a healthy diet. Many people talk Swank, Mediterranean, etc, but pick something that you can keep with. In RRMS, the first part is largely based on inflammation so avoid foods that promote inflammation.
- maintain a healthy stress level. Stress breaks so many bodily systems and makes you more susceptible to troubles. This even includes depression, anxiety, etc.
- stay physically active. I won't preach to the choir. Just keep up with what you are doing now.
- don't smoke. I remember a study that showed smoking increased disease progression by 29%. It's simply not worth it and not smoking will save you money.
- stay on a tecfidera until it's no longer working for you, a clearly better medication is available or a cure is developed. Just remember you cannot have fewer relapses than zero so as long as you are stable on Tecfidera I would be hesitant to change.

Again, so glad for your current state of affairs. I remember how hard you were struggling not too long ago.

I wish you well...



P.S. some people do well without being on MS medications. Some people do well on older medications. I'm not trying to disparage either group. Just saying I wear my seatbelt, glad I have air bags and look both ways before crossing an intersection. I treat my MS the same way and gratefully take my medication....

[Mamabug]

There are a few obvious things you can do to try and prolong your remission:
- maintain a healthy diet. Many people talk Swank, Mediterranean, etc, but pick something that you can keep with. In RRMS, the first part is largely based on inflammation so avoid foods that promote inflammation.

Ant1981 -- Marco had some good suggestions.

Regarding diet, in addition to Swank, other MS diets include OMS, Embry and Wahls. Additional diets touted as healthy include Mediterranean and Paleo.

My functional medicine doctor recommends no wheat, no dairy, almost no cane sugar. An IgG food sensitivity test identified additional restricted foods.

I think it most closely resembles the Wahls diet, but I need to do more reading about that.

[Boudreaux]

Why you worried....

Just do your thing and quit wondering why you are doing well. Enjoy everyday and get the most out of it.

Use that energy somewhere else.

[gargantua]

I personally enjoy posts from those doing well. I like getting updates from people that found us when diagnosed, went thru the roller coaster ride of emotions as they adjust to it, and now are living life, with MS just a part of it and no longer the main focus of their life.

If you are doing well and feel like you get value from the site, please stick around!

Thanks - your experience has helped me to make some important (DMT) decisions.

There are lots of online communities, but not all of them are set up to help people through rough spots MS can (but might not) bring. One reason to check in is that sharing perspective can help others to understand what's important so they can make the best decisions.

But as with everything, work-life balance is important. Too much commiserating can be harmful.

[Seasha]

Everyone, don't hate me for this. 🙂

If you are feeling great and have no questions, step away from MS forums. Seriously. You're doing great. You are not MS. You are everything else you do, that nk, and feel.

Pick something that you enjoy and find a message board on that topic. Spend the time you would spend here on the other board.

Come here ONLY when you have a question or want to vent about MS, since only those with MS get it.

It's healthy to step away from MS as much as possible. Constantly "viewing" other people's struggles can be draining. MS is something you have. It's not something you are, and it shouldn't be foremost in your mind daily.

MMMS - I can understand and agree to some of the points you are trying to convey and you are absolutely right in that it can be healthy to step away from time to time. But I respectfully disagree on your stance to only come here to vent or if you have a question.. That is not what MSWorld is only about - it's about so much more! You might want to read over the mission statement and core values to fully grasp what this message board was intended for. From the words of our founder, Kathleen Wilson - https://www.msworld.org/home/about-msworld/

Personally, I think it's very helpful to come here to not only share our challenges, but also to help celebrate our achievements and our good days. To share every part of our journeys, to just "talk" with one another - The first point of the mission statement is to help end isolation that people experience when diagnosed with MS. I know this has helped me tremendously!

We are here for one another, no matter what the reason. That to me is the beauty of this site. And yes! enjoy your good health when you can because you can- wise words, MMMS

[Mamabug]

Personally, I think it's very helpful to come here to not only share our challenges, but also to help celebrate our achievements and our good days. To share every part of our journeys, to just "talk" with one another - The first point of the mission statement is to help end isolation that people experience when diagnosed with MS. I know this has helped me tremendously!

Ditto.....

[Jules A]

I've been well for almost 15 years and yet still find value in the camaraderie and information I have gotten from this site. Although I often long for the activity and variety of years ago this site still means a lot to me. It was the first place I found when I was newly diagnosed out of the blue and in a very bad place. The kind words and encouragement were priceless. Like anything in life if we don't nurture it there may come a time when we need the help and it ceases to exist.

[Boudreaux]

MMMS - I can understand and agree to some of the points you are trying to convey and you are absolutely right in that it can be healthy to step away from time to time. But I respectfully disagree on your stance to only come here to vent or if you have a question.. That is not what MSWorld is only about - it's about so much more! You might want to read over the mission statement and core values to fully grasp what this message board was intended for. From the words of our founder, Kathleen Wilson - https://www.msworld.org/home/about-msworld/

Personally, I think it's very helpful to come here to not only share our challenges, but also to help celebrate our achievements and our good days. To share every part of our journeys, to just "talk" with one another - The first point of the mission statement is to help end isolation that people experience when diagnosed with MS. I know this has helped me tremendously!

We are here for one another, no matter what the reason. That to me is the beauty of this site. And yes! enjoy your good health when you can because you can- wise words, MMMS

Where's that like button at?

[SNOOPY]

I've been well for almost 15 years and yet still find value in the camaraderie and information I have gotten from this site. Although I often long for the activity and variety of years ago this site still means a lot to me.

Me too

MMMS, some come to this site for a short time and some stay for different reasons. I had been diagnosed for quite some time before I accidentally found MSWorld. I had never been on any sort of forum where you could "talk" to others online. I didn't really come here for answers or many questions about this disease, although I have leaned a lot from other members.

I was in a very, very, bad place in my life. I was suicidal and mentally/emotionally very unstable. When I found this site I was looking for something to distract me. This site allowed me to distant myself from what I was going through and help others in the process.

I stay because I want to. I also have a real life that I am present and involved in.

[MMMMS]

What I said didn't come from only me. I've heard it from Dr's, fellow MSers, and speakers at MS conferences.

If coming to the boards frequently has you constantly thinking about symptoms, even though you don't have any, I still think that it's healthy to find some other outlets. Someone with no symptoms and full ability, who reports full activity probably isn't isolated (another post).

Constant thoughts of MS is very unhealthy. And aren't we here to support each other, not to maintain a high number of daily log ins?

It's healthier to have broad interests, human connections in more than one area of your life, and to keep worrisome thoughts about your body to a minimum.

It's nice to have a place to talk to other people who have MS. But I don't think it's healthy for MS to dominate anyone's thoughts.

[pennstater]

What I said didn't come from only me. I've heard it from Dr's, fellow MSers, and speakers at MS conferences.

If coming to the boards frequently has you constantly thinking about symptoms, even though you don't have any, I still think that it's healthy to find some other outlets. Someone with no symptoms and full ability, who reports full activity probably isn't isolated (another post).

Constant thoughts of MS is very unhealthy. And aren't we here to support each other, not to maintain a high number of daily log ins?

It's healthier to have broad interests, human connections in more than one area of your life, and to keep worrisome thoughts about your body to a minimum.

It's nice to have a place to talk to other people who have MS. But I don't think it's healthy for MS to dominate anyone's thoughts.

You can still come here frequently and have a well balanced life. I volunteer, exercise, have an active family and social life. I have hobbies and interests. Just because I come here frequently doesn't mean MS dominates my thoughts.

Yes, if you are the type of person who obsesses and is psychosomatic and identifies with every symptom you hear, then you are better off minimizing exposure. Stay off the internet!

And we all know life, as well as MS, can be a roller coaster ride and we need to adjust our behaviors based on our mental and physical behaviors. Take a break if it is unhealthy. I have done that when I needed to.

Ant is still learning what living with MS can be like. As with most people newly diagnosed, you hear and read about all the worse case scenarios. As you live a normal life, you wonder, because I don't have the symptoms I read about. He wasn't projecting symptoms on himself, just wondering if this what life can be like with MS. It is a normal inquiry. It mirrors some conversations I have had at my infusion center with other MS patients.

People come here for lots of reasons. Please don't assume a question means unhealthy relationship with MS in their life. I don't want to discourage people from asking questions. Nothing would be worse than having the question, and not feeling welcome to ask it.

[kelm10]

we all know

We all know that we have heard things from everyone at what we should do, that was not correct.

We should do what gives us great balance. This site is for some.

Ant, nothing new that what we have been telling you in chat.

[MMMMS]

Are you referring to other conversations and want me to know that they're going on?

Obsession about your body is unhealthy. If that is considered wrong here, well.... 🙂

Someone new to MS is wondering how feeling well is possible after reading about other people's struggles. The literature clearly indicates that, especially early on, a person can have full recovery from a flare, have full function. Why would that be doubted?

I remember coming here early on when I seriously questioned and wanted a definite answer. Someone said something like, Well, if you feel well enough to doubt it, I wish I were you. And, just enjoy your good health. Lesson learned. And thank you to whoever that was.

These forums are great. But if it's causing you to focus too much on your body, stepping away is the healthy thing to do. What better way to figure that out than stepping away, visiting a lot less, and seeing where your focus falls?

Now, some might have seen the advice given to me as wrong. But it was the best thing anyone said. And it's the one response I actually remember.

We all know that we have heard things from everyone at what we should do, that was not correct.

We should do what gives us great balance. This site is for some.

Ant, nothing new that what we have been telling you in chat.

[SNOOPY]

MMMMS,

The main problem with online conversations has always been misunderstanding or misconstruing what a person might actually mean. You lose the ability to see facial expressions and body language when conversing online.

Someone new to MS is wondering how feeling well is possible after reading about other people's struggles. The literature clearly indicates that, especially early on, a person can have full recovery from a flare, have full function. Why would that be doubted?

In the case of Relapsing/Remitting MS exacerbations can be complete (no symptoms) or partial (residual symptoms), with partial being the most common. Even with residual symptoms they can be mild enough that you lifestyle isn't effected. It's also common to experience symptoms that come and go.

But if it's causing you to focus too much on your body, stepping away is the healthy thing to do.

Of course it is. But to tell members to do so really isn't necessary. We have had many members take the initiative to step away as they recognize what is happening and have even posted they were doing so for that reason.