? For all the folks that have had MS for more than 10 years

[alliesmommy]

Thank you to all who sent responses.

This is all still new but like I said before, doc thinks I have had this for many years and the fact that I was dx 6months go and I already see progression scares the bejesus out of me.............So I really appreciate what you ave been thru

[lemstar]

I hate to respond for fear of jinxing myself….I have had MS for 32 years, and was only formally diagnosed 2 years ago. My first episode was 32 yrs ago, and never completely resolved. Now in retrospect, I can see the many MS symptoms I have lived with. Then 2 yrs ago, I had a flare, and was diagnosed, and put on Rebif. I believe Rebif made me worse. I am not on any meds now, and remain fairly consistent. I have snesory symptoms galore, and some mild weakness and fatigue issues, as well as some mild balance issues. My symptoms wax and wane, but I am still quite functional and mobile.

[Sir-Voor]

This year in October will be my 10th anniversary since Dx. and been filled its ups on downs.
That right my abilities have not been purely a down, and right now I’m doing great.

I was on a drug that caused flu like symptoms, and being heat sensitive my abilities where way down.
After switching drug me abilities greatly returned.

In 2010 I started Ampyra, and now WOW!
I’m doing great.
Most notably brain fog and slurred speech gone, and walking, balance, heat-sensitive and fatigue greatly improved too near normal.
(I feel healthier then a lot of people turning 49)


So alliesmommy even though my MS is not the norm, I feel it should give you and others hope.
Eat right, stay active, and be positive and you too may beat the odds.

[skreynolds57]

Yes, I'm getting worse, thanks for asking!

Nothing, passive or active, has stopped my (secondary) progression which has been going for 18 years. Of course, because some people, don't progress as rapidly or as consistently. I must be doing something wrong.

One of the lousy things about MS is it can be very hard sometimes to feel you've done everything you can, especially when doing anything is so much work. The line between giving your all and giving up, can become very thin and very blurry. If you think you know where it is, now, just wait.

[Tawanda]

You go, Sir-Voor!

MS is not the norm, I feel it should give you and others hope.
Eat right, stay active, and be positive and you too may beat the odds.

It's so interesting how varied these 10+ year M.S. Veterans are! Thank you O.P. for posing such an interesting question! Apparently we are all over the map. This makes that "unknown/waiting for the other shoe to drop" symptom all the more pressing considering such varied results!

I pray, Sir Voor, that with the advancements being made in the treatment of M.S. that your gentler course of M.S. will become the "new norm" and that there won't be any awful odds to beat anymore! Right now there are as many version of M.S. as there are people with M.S. so who knows what the future will bring? I hope this disease has mercy on all of us, and better yet, goes away entirely in our lifetime.

In the mean time, I wish I could worry about simple things like where I want to go on vacation this summer or what new wrinkle cream to try instead of worrying about things like how much longer will I be able to drive? Walk? Or even "see", as my vision has gone downhill so fast since M.S. that it scares me to death!

[jazzgirl]

Yes, I'm getting worse, thanks for asking!

Nothing, passive or active, has stopped my (secondary) progression which has been going for 18 years. Of course, because some people, don't progress as rapidly or as consistently. I must be doing something wrong.

One of the lousy things about MS is it can be very hard sometimes to feel you've done everything you can, especially when doing anything is so much work. The line between giving your all and giving up, can become very thin and very blurry. If you think you know where it is, now, just wait.

Don't beat yourself up, Steve. I was very physically active, and MS stole quite a bit from me. It's not our fault! It just IS. I, personally, despise the **** out of it, but it does us no good to hate what we cannot change. I tried to change it. I was a good girl, took all the drugs to try to slow it down. They did nothing for me....not one of them. I'm still (monetarily) paying for Tysabri ONE YEAR after I stopped taking it. Really? REALLY! It's a joke (or so it seems...).

One day at a time. It's the only way to go. Stay strong, sir!

[knuckle]

I've had MS for about 25 years and now require wheels in one form or another - a rollator/walker, scooter, wheelchair, whatever tool meets the need.

I think the way MS progresses is much different between men and women because of the influence of hormones on the immune system.

My MS is limited to my spine. I see fine, think fine, talk fine, no pain, no problems really with anything at except walking and everything seems to have leveled out over the past four years.

I don't think any of the drugs I took really helped much at all (Avonex, Rebif, Copaxone, Novantrone, Tysabri). Maybe they slowed the disease down some but if I was given the chance to go back I wouldn't take any of them. I also think the efficacy of these drugs is less in respect to spinal lesions.

I think you're just as well off, probably better, exploring "alternative treatments" that other people have reported success with. Back when I was diagnosed there was no Internet and you were at the mercy of a neurologist.

[Tawanda]

[B]

Don't beat yourself up, Steve. I was very physically active, and MS stole quite a bit from me. It's not our fault! It just IS. I, personally, despise the **** out of it, but it does us no good to hate what we cannot change. I tried to change it. I was a good girl, took all the drugs to try to slow it down. They did nothing for me....not one of them. I'm still (monetarily) paying for Tysabri ONE YEAR after I stopped taking it. Really? REALLY! It's a joke (or so it seems...).

One day at a time. It's the only way to go. Stay strong, sir!

I know what you mean about being a "good girl". Is it my imagination or do those of us with M.S. feel more inclined to "apologize" for having a DISEASE that we never asked for? My own neurologist (my first one, as I don't see him any more!) told me his advice to me as a newbee would be to down-play my disease as much as possible to keep family harmony. To only talk about my misery with M.S. at my doctor visits. (not that I bombard my family and that I am fortunate to have this site to vent, but if I can't do something because of my M.S., am I supposed to lie to them??). I also went to a "newbie" seminar for MSers in which the speaker..who didn't have M.S...said that MSers are too quick to leave the workplace. When I think back to when I went on SSDI, I couldn't have felt any guilty-er, nor could I have worked one more day, either! I didn't earn 2 college degrees to stay at home nursing a disease!

I realize I am getting O.T. but your post really struck a chord about another incidious, invisible and unfair symptom of M.S.: GUILT for not doing better!

[Tawanda]

Back when I was diagnosed there was no Internet and you were at the mercy of a neurologist.

I shudder to think!! My father was in the library trying to sort this M-Mess stuff out when my mother was diagnosed in 1960 (?). Nobody had even heard of it, including both of my parents.

The internet gives us support, hope, and keeps our doctors on their toes as well when we have semi-intellegent questions to throw at them. When I think of the tools in my M.S. arsenal, I rarely think "Internet". Thanks for the reminder that knowledge is power.

[skreynolds57]

Thanks jazzgirl. You have been a great help to me on MS World. I, myself, don't question my own actions so much as I know others do. I suppose that's the challenge of MS being so variable and anecdotes sounding so good..