MS: Better or worse than expected?

[Thinkimjob]

I think we all have reserves of courage we didn't know we had.
Thanks, Cara Lea.

[spoiledbrat]

It is a lot worse than expected. That is because I expected nothing. I had never heard of M.S. and my first information about it was in all the pamphlets they had given me after my official diagnosis.

Then for a couple years I did not have a lot of symptoms and my initial symptom had went away. I suffered from fatigue during those years, but it was not debilitating and I did not know to attribute it to M.S. I did not feel anything was ever M.S. until my leg gave out while I was on a stool, I experienced vertigo, and I kept dropping things while I was cooking... all in the same day.

[Auctioneer]

For me, it depends on the day. When I was first diagnosed in 2006 I was told that I have probably had MS for 25 - 30 years. I was just happy at the time that I finally had an answer as to what was happening to me. My neurologist told me that I would have bad days and good days. I said, "Doc, you don't know me, I will have good days and better days". Turns out, he was right. I have some really bad days, but still getting by. Daily pain in my legs, especially the right leg. Some days are way worse than others. Today is starting out as a high pain day. Legs had me awake early this morning. Now they are ice cold on the inside and burning and painful on the outside. What a crazy combination.

[cara_lea]

Originally Posted by Auctioneer

Now they are ice cold on the inside and burning and painful on the outside. What a crazy combination.

I hate that.

[SNOOPY]

Originally Posted by Tawanda

but through the years has life with M.S. been better or worse than you originally gauged?

After 27 years diagnosed and symptoms that go back to childhood, my life with MS has been better than I expected. But, my life isn't over yet

Could it be the DMDs?

I give no credit to the DMDs since I have never taken them

[Mynamegoeshere1]

I have only been diagnosed since October 2011 and have had 4 relapses since then from 4 new lesions, constant pain, total change in my life. I thought it would get better after a few months and as most would say I'd be "normal" for years until the next relapse, but nope. I already have a wheelchair, can hardly use my arms due to weakness, memory fog, fatigue, allergic reactions to medications. I just want to hit a remitting stage, then I'll tell you if it's any better.

Originally Posted by rdmc

It was better than I expected, until it was worse than I expected...if that makes any sense.

Originally Posted by cara_lea

Like several people, I did GREAT the first 10 years. When I was dx'd I believed with every cell in my body that M.S. wasn't going to affect [B]me[/B]. oh, no, not me.

So far, better than expected - I'm still working 5 years after first known exacerbation, but this sort of thing does frighten me.

[bops_mama]

Almost 6 months ago i was DX'd some days are better than others........i have a friend who is MUCH worse than i am with MS and that is all i ever had to go off of.......

I never believed this could happen to ME it was one of those things that happened to OTHER PEOPLE...and here i am.....

The shots have become bearable, i can barely tell most days that i have MS aside from the fatigue and the slight tingle in my left leg....I want more kids, i want to be able to take care of the daughter i have and to be the wife that my husband deserves.....

if i can have those things or anywhere close...then it will be better than what i have come to expect....

[rdmc]

Originally Posted by BigA

So far, better than expected - I'm still working 5 years after first known exacerbation, but this sort of thing does frighten me.

Well I typed this once, but it seems to have disappeared from my screen, so hopefully this isn't a duplicate.

You quoted me in your post, but I didn't type that to scare anyone...in fact, just the opposite, I think I've done remarkably well for having the disease as long as the neuros believe I've had it.

But we can't expect for a progressive disease never to progress, and I think that's what happened to me, it just caught up with me eventually.

I went from always bouncing back with just a few residual symptoms, to having those symptoms, not only hang around but get very hard to control...but like I said, that's only been in the last year and a half.

I do still work a full time job, but from home. Couldn't deal with the confusion in an office...I'd have the Walmart Syndrome at work.

And everyone's situation is different...so you just never know. Plus in a few years maybe they'll come up with a "miracle med"...we can hope .

Originally Posted by rdmc

You quoted me in your post, but I didn't type that to scare anyone...in fact, just the opposite, I think I've done remarkably well for having the disease as long as the neuros believe I've had it.

But we can't expect for a progressive disease never to progress, and I think that's what happened to me, it just caught up with me eventually.

we can hope .

I know. I create my own fear. But as you say, I'm still in the "it won't get me...much" phase. Time will tell how well I do. I've had some small progression this year and in a way that's comforting - like when you get your new car scratched and finally stop obsessing about it. But I'm still fighting daily with exercise and diet.

[spoiledbrat]

Originally Posted by Auctioneer

For me, it depends on the day. When I was first diagnosed in 2006 I was told that I have probably had MS for 25 - 30 years...

How did they know or come to the conclusion that you probably had it all that time?

[jbell2435]

6 months after dx, I got way worse than I thought I ever would this soon. Vertigo flare sent me to ER 3/31 and couldn't drive for 3 weeks, then a walker for 2 weeks after that, just now feeling somewhat like I did pre-flare...

So frustrating when I was feeling so well, then BOOM, MS rears it's ugly head and tells me who's in the drivers seat...

[Tawanda]

Originally Posted by SNOOPY

I give no credit to the DMDs since I have never taken them

Who knows for sure what the DMDs do. Even if it's all "in my head" that they're helping me, they're still helping me. I do hope better meds come out in my lifetime where there is no longer a question of the drug's effectiveness, just a universal, "WOW...THIS STUFF WORKS!"

Note to M.S. Research Scientists: Please find something that will really knock our socks off so we can be afraid of dying again!

[cara_lea]

Originally Posted by BigA

So far, better than expected - I'm still working 5 years after first known exacerbation, but this sort of thing does frighten me.

I'm still doing better than many many people expected. Really doing quite well.
Any progression at all took me off guard because my #1 method of coping was denial. :-/ I didn't mean to be one of those people with scary horror stories.

(side note- I saw a pregnancy t-shirt that said:
"This is a 'labor story' free zone" )

[cara_lea]

oh, part of my post was cut off...It was the encouragement part.
-So, please keep expecting the best of every moment!