Being on treatment assuring?

[Ant1981]

Being on a treatment that is working assure that disability will never come? Or at least delay it by 2-3 decades or more?

I only ask cause tecfidera is works for me and I have minimal sx after dx. What can I expect in the future? Guess no one can answer that but I’m feeling good right now and hope it continues for a very long time.

[Mamabug]

I don't think there is any guarantee.

- Being on an effective treatment helps.
- A healthy diet helps. There are different opinions about what that means. My MS specialist believes in a healthy NAS (North America Standard) diet. My functional medicine doctor believes in GF, dairy free, no added sugar.
- Regular exercise helps. My MS specialist believes that aerobic exercise delays progression.

[Daisycat]

I wish we had a way to know what our future holds when it comes to this disease. Not knowing and having no way of knowing is the worst part of it for me.

I agree with what Mamabug said about those things helping. After this weekend I am going to start trying a fasting diet since I have read a lot of good things about it.

[pennstater]

We really have no way of knowing. The stronger meds are too new to have any long term statistics on.

But getting diagnosed early, starting a DMD early in the disease process, a full recovery from initial relapse, stable MRIs, and longer duration between early relapses are all thought to be good signs for a more favorable prognosis.

Since I had no lower body symptoms, my first neuro's goal for me was to not need any walking assistance until all my peers do. I have adopted that and try to walk everyday. Just completed 2.5 months PT for balance as I was experiencing more issues. PT definitely helped and I went from moderate fall risk to low fall risk.

My point above is continue doing all the things you are, exercising both body and mind, eat healthy, take your DMT, and when needed, take additional steps to keep you from progressing. Stay current on MS research and talk to your neuro about it. I am not advocating you have to do this 24x7, 365 days a year (but meds - yes). You have to take a day off sometimes, treat yourself.

It is no guarantee, but by controlling what you can, you give yourself the best shot possible and won't leave room later in life for second guessing if you did all you could.

[Daisycat]

We really have no way of knowing. The stronger meds are too new to have any long term statistics on.

But getting diagnosed early, starting a DMD early in the disease process, a full recovery from initial relapse, stable MRIs, and longer duration between early relapses are all thought to be good signs for a more favorable prognosis.

.

I think my problem is I like to plan everything and know what I am going to do and how I am going to do it. This disease kind of takes away that power from me and I HATE that. I know no matter how much I plan or what I do I could still wake up tomorrow and have a flare.

The fact that I cannot control it makes me so mad and sometimes makes me wonder what is the point of doing all the stuff I am doing ( starting my fasting diet , not smoking , 3 times a week injections , going to bed early (most nights) , trying to do something to work out even when I am exhausted) if I really have no control over the outcome. I mean I can influence it to a degree , but I do not really have complete control.

[pennstater]

I think my problem is I like to plan everything and know what I am going to do and how I am going to do it. This disease kind of takes away that power from me and I HATE that. I know no matter how much I plan or what I do I could still wake up tomorrow and have a flare.

The fact that I cannot control it makes me so mad and sometimes makes me wonder what is the point of doing all the stuff I am doing ( starting my fasting diet , not smoking , 3 times a week injections , going to bed early (most nights) , trying to do something to work out even when I am exhausted) if I really have no control over the outcome. I mean I can influence it to a degree , but I do not really have complete control.

MS or not - you could never control your future. Car accident, other illness, etc... It was always an uncertain, non- guaranteed future. MS makes us more aware of that than "healthy" people. Once you can accept that, coming to terms with unknown future comes a little easier. I always remind myself of that when I start getting anxious about MS.

[Daisycat]

MS or not - you could never control your future. Car accident, other illness, etc... It was always an uncertain, non- guaranteed future. MS makes us more aware of that than "healthy" people. Once you can accept that, coming to terms with unknown future comes a little easier. I always remind myself of that when I start getting anxious about MS.

I see where you are coming from and I always know there is a chance of a car wreck or something else happening every day. This disease is something I will always have and nothing I can do will fix it, and I hate having no control over my future.

This disease is something that could flare up at any second of any day so I never have a second where I am free from worry about what my future holds. I hate feeling hopeless and not being able to fix it. Usually if I have a problem causing me to feel hopeless I am able to find a way to fix it. But since this disease has no cure, there is no way to fix my hopelessness.


I really miss my blissful ignorance before I knew I had this. I might have been smoking (which is bad for me I know) but at least I was happy, I honestly think I will never feel that way again

[MyGirlsMom]

MS or not - you could never control your future. Car accident, other illness, etc... It was always an uncertain, non- guaranteed future. MS makes us more aware of that than "healthy" people. Once you can accept that, coming to terms with unknown future comes a little easier. I always remind myself of that when I start getting anxious about MS.

Yes, that is it exactly. We just thought we had control as there was nothing distracting us to tell us we didn’t. An MS dx changes all of that so we tend to think about it more often. That said, for those of you newly diagnosed, that thought being front and center doesn’t always quite stay that way. I have to say I have had some periods of time where my MS wasn’t so constantly on my mind. I wish that for all of us!!

[Daisycat]

Yes, that is it exactly. We just thought we had control as there was nothing distracting us to tell us we didn’t. An MS dx changes all of that so we tend to think about it more often. That said, for those of you newly diagnosed, that thought being front and center doesn’t always quite stay that way. I have to say I have had some periods of time where my MS wasn’t so constantly on my mind. I wish that for all of us!!

I hope you are right because this disease is pretty much all I think about 24/7. I am even starting to have dreams about this disease so now I have no break from my constant worry and stress over this.

[Ant1981]

Agree

I hope you are right because this disease is pretty much all I think about 24/7. I am even starting to have dreams about this disease so now I have no break from my constant worry and stress over this.

yes I totally feel you. I try and remain positive but the mental game is far worse right now than the physical sx, I just wanna live a healthy, long life. We have something to carry around with me now everyday.

tho it is reassuring that once full acceptance is attained than thinking of this disease will be less... even to a point where it’s not even considered at times... I look forward to that point

man life is tough as it is... last thing We all needed was this disease.

hope we both can get the full acccptance and live peacefully.

[Daisycat]

yes I totally feel you. I try and remain positive but the mental game is far worse right now than the physical sx, I just wanna live a healthy, long life. We have something to carry around with me now everyday.

tho it is reassuring that once full acceptance is attained than thinking of this disease will be less... even to a point where it’s not even considered at times... I look forward to that point

man life is tough as it is... last thing We all needed was this disease.

hope we both can get the full acccptance and live peacefully.

The mental part of this is the worst for me right now. I try to find things to take my mind off it, but it is very hard. Hopefully we can both find some peace and acceptance soon.

For what its worth you have been an inspiration for me with this. We were basically diagnosed at the same time and you were always encouraging and helpful with your advice.

[Cat Mom]

After a couple of unsuccessful years on Rebif, I have been on Copaxone for the past 11 years. I've had a few non-steroid-worthy flares, and as well have lost some ability to do every-day things like I used to but hey, I'm also 53 now, 40 when diagnosed. MS is the only thing wrong with me but who knows if some of my aches and pains are due to my age and not my MS.

Overall, MS-wise I'm mostly better than when first diagnosed, I used a cane all of the time then, barely could walk far, used Trans-Help and now a cane only when on long trips or if I'm tired and rather than Trans-Help I use the "big-girl bus" to get around. I never regained my sight from my first flare but I'm so used to it now.

Who knows? That's the best part... we never know what we would have felt like if not on our meds, or on different meds.

Jen

[Mamabug]

We're similar in many ways, Jen.

After a couple of unsuccessful years on Rebif, I have been on Copaxone for the past 11 years.

I was on betaseron unsuccessfully for 5 years. Have been on copaxone for 10 years.

I've had a few non-steroid-worthy flares, and as well have lost some ability to do every-day things like I used to but hey, I'm also 53 now, 40 when diagnosed. MS is the only thing wrong with me but who knows if some of my aches and pains are due to my age and not my MS.

I've had a few more minor flares since copaxone. But no hospitalizations, and with betaseron, I was in the hospital once or twice a year for 1-3 weeks at a time. No flares (even minor ones) since 2014. No hospitalizations since 2010.

I'm 56; got MS when I was 39.

No other dx either.

Overall, MS-wise I'm mostly better than when first diagnosed, I used a cane all of the time then, barely could walk far, used Trans-Help and now a cane only when on long trips or if I'm tired and rather than Trans-Help I use the "big-girl bus" to get around. I never regained my sight from my first flare but I'm so used to it now.

I'm better in some ways. No flares (even minor ones) since 2014. No flares or hospitalizations for awhile.

But I started using a cane when I leave the house about six months ago. Severe astigmatism that's not related to MS, but it's probably progressed slightly more quickly because of it.

Who knows? That's the best part... we never know what we would have felt like if not on our meds, or on different meds.

Yeah, we really don't know. And even if we did, we can't turn back time.

[Ant1981]

I try

Thanks daisycat, I do try but there are times when I’m really down.

I fought furiously in the beginning cause I never want to go back to my dx flare state, diet, excerdize, meditations but it’s hard to keep it up. +1 year in I’m still trying to get my life normalized seems like and endless chase. New career, single again, no job..it’s very tough but I have faith. I pretty normal like pre-dx but the flare that hospitalized me haunts me to this day. its really crappy we have to chg a whole lifestyle cause of MS but hopefully it’s all for the better this struggling.

I love to hike and go to the gym so I’m really thankful I can still do that when I could hardly walk 13 months ago. Scary stuff.

Hope no major disabilities come to us cause that would be very cruel I think for that to happen to anyone. I’m young,very active and still I think I could be doing more.

The mental part of this is the worst for me right now. I try to find things to take my mind off it, but it is very hard. Hopefully we can both find some peace and acceptance soon.

For what its worth you have been an inspiration for me with this. We were basically diagnosed at the same time and you were always encouraging and helpful with your advice.

[Mamabug]

The mental part of this is the worst for me right now. I try to find things to take my mind off it, but it is very hard. Hopefully we can both find some peace and acceptance soon.

For what its worth you have been an inspiration for me with this. We were basically diagnosed at the same time and you were always encouraging and helpful with your advice.

I want to thank you, Ante, for being an inspiration to many.

And, Daisycat, you've come a long way. You are able, now, even though you still experience many concerns and worries, to take inspiration and suggestions from others.