Long term outlook

[Ant1981]

I am doing good and I know no one can tell the future but after reading this article:
https://multiplesclerosis.net/living...ten-year-mark/
i am worried about my next 10-13 years down the road and if I will be a active as I am today, I know ppl age but I still want to be fully mobile.
i think my anxiety is still hiding and still comes up from time to time. Be great if I never relapse again or have an relatively unaffected by this MS, but it’s so uncertain and it bothers me.

im just living my life and stable right on a DMD that’s working now so that’s all I got, in 10-13 years who knows wat research uncovers... this disease is so unnerving at times cause my dx flare was awful scary wat happened to me.

[marti]

I think we all go through this uncertainty while we're looking forward with MS. The neuro who diagnosed me told me he did not see me ending up in a wheelchair. It's been almost 18 years and his prediction is still on the nose.

Things have changed as I've aged, but I'm still upright. Try not to look at the worst case scenario yet. Take things a day at a time. You can't change it anyway. In a few years there could be even more advances and more answers to this puzzle. When I started out there were only 3 DMD's. There are so many more choices now.

[502E79]

Hi Ant!

I apologize for responding to a RRMS thread knowing only about PPMS (and very little knowledge there either). And for not reading your link.

But I'm beginning my 11 th year with MS, and now equipped with the knowledge of proper MS Sx, you can say about 22 years. I'm still walking, obvious limp but currently unassisted.

Also I'm older (68, M) which can be taken two ways, (both posted on MSW, over the years), one, MS comes on quicker / stronger and the exact opposite... slows down / more manageable. I don't know and really don't care, I do the best I can regardless. What else can anyone do?

There is no such thing as security in life, never has been. Anyone who thinks they have control of life and planning their future hasn't met with any real "bumps in the road." At some point maturity will take hold.

So don't fret about things out of your grasp. Yield. Accept. Your newfound humility will carry you forward to the next day. You own the MS, it does not own you.

"Only the wise man is content with what is his. All foolishness suffers the burden of dissatisfaction with itself." -Seneca

[pennstater]

Hi Ant,

10-13 years would take the timeline back to 2005-2008. A few things to point out:

1. A lot of people diagnosed back then, me included, probably had the disease awhile before diagnosis - untreated.
2. The more effective treatments for relapse reduction weren't around. With the exception of Tysabri which started and then pulled off market.
3. I have found in discussions with people at my infusion center, that people who have not really been impacted by MS tend to not be online posting frequently, if they are even on it at all.

As time goes on, we will learn whether fewer relapses equates to less disability for these newer meds. For me, the symptoms I have now were symptoms that didn't resolve following relapses. I really haven't progressed much since I started Tysabri. I am 13, almost 14 years diagnosed, and most likely 13 years onset of disease prior to diagnosis, so untreated. I've met a few people on Tysabri 8 years, and they have never relapsed and no symptoms.

Both the power and disadvantage of the internet - you can find sites, threads, and blogs to support any position or opinion. You have to take a step back and think some about any biases/information gaps/sources.

[Ant1981]

Thanks

Much thanks for the replies, I’m relatively newly dx (14 months) and feeling great. I’m at the point where I can hardly imagine anything terrible happening again but this disease is for life and I’m just still getting used to the idea of living well for the remainder of my life with MS alongside, imagining anything else is just very unnerving and I’m only on here to collect the wisdom and support of all the members here, which helps me a lot.

[sarabeach123]

Hi Ant,

1. I have found in discussions with people at my infusion center, that people who have not really been impacted by MS tend to not be online posting frequently, if they are even on it at all.

This is so true! My MS nurse told me this when I was first diagnosed. It may sound absolutely ridiculous, but I do have some guilt when posting here because I know my MS is so mild compared to many others. But I also do recognize that my concerns and worries are valid and part of my emotional healing comes from a supportive environment like this. I also believe I have a very important role to play here to be one of those people telling the newly diagnosed that the outlook can possibly be much better than the worst case scenario.

My neuro has told me at every visit that he sees no reason why I can't live my entire life with no limitations.

[gargantua]

Hi Ant, I like your check-ins and how you always give a progress report about your life. People can say that you are in good shape because you seem to have had an early diagnosis and you went on a well-regarded treatment immediately. In my opinion, you are doing the very best you can for yourself by focusing on a stable livelihood with secure medical coverage for whichever options you might need in the future. Not having to worry about that will let you live in the moment more and more as all of this settles in.

[Mamabug]

Yes; MS is unnerving. But, we adjust to the cards life deals us.

My advice -- take your meds, eat a healthy diet, exercise regularly, live a healthy lifestyle, practice resiliency strategies.

[pennstater]

This is so true! My MS nurse told me this when I was first diagnosed. It may sound absolutely ridiculous, but I do have some guilt when posting here because I know my MS is so mild compared to many others. But I also do recognize that my concerns and worries are valid and part of my emotional healing comes from a supportive environment like this. I also believe I have a very important role to play here to be one of those people telling the newly diagnosed that the outlook can possibly be much better than the worst case scenario.

My neuro has told me at every visit that he sees no reason why I can't live my entire life with no limitations.

Please stick around. I do think the board is better when people in varying stages and with varying experiences participate.

And yes , your concerns and questions are just as meaningful as any other poster. It truly is part of a healthy healing process and a safe outlet for the rant when needed.

[pennstater]

Yes; MS is unnerving. But, we adjust to the cards life deals us.

My advice -- take your meds, eat a healthy diet, exercise regularly, live a healthy lifestyle, practice resiliency strategies.

I think I am adding to my Quote book - credit mamabug, aka Faith😉

[Ant1981]

You guys are so awesome!

I just woke woke up and Reading this morning when I came across that article. It’s not like I haven’t read anything like that before but it just reminds me, as good as I feel I still have MS. I can’t chg that but what I can chg is how I treat myself.

My diploma is a ways out till completion (2.5 years) and start a whole new career, but as time goes I find it will be done before I know it.

Ive recently attended a friendship church and meeting the pastor for a coffee as I’m interested in volunteer opportunities and getting to know the community. I want to give back to help others I’ve taken so much for granted pre-dx(Christmas is great chance). I’m also starting my workouts everyday at 5:30 am and like to make it a habit. Eating sensibly is something I always seek.
Tecfidera is doing its job and I don’t want to be smug or anything as I know a lot of the members are dealing with bad sx. I know what MS can do to me I had an awful dx flare. Still haunts me to this day.

last weeks message at the church was rise and fall of hope... hope is a choice, I can choose to be hopeful or hopeless. Nevertheless I still get anxiety spikes now and again and come here to release, it’s very reassuring, again thank you all. This disease scares me knowing it can strike anytime, hopefully not for a very, very, very long time