MS: Better or worse than expected?

[Tawanda]

After your diagnosis, I assumed you were blown away, but through the years has life with M.S. been better or worse than you originally gauged?

M.S. has been in my family for 2 generations. My mother had it for 12 years and was completely imobile, so in that respect, this disease has treated me better. Could it be the DMDs?

On the other hand, I never knew the fatigue angle. My Mom just sat still in a wheelchair not saying much, so I found out about this horrible aspect of the diseaase first-hand.

It's been 8 years officially for me, BTW.

[Alicious]

It's complicated. I've only known for 18+ months, but onset was over 5 years ago. Other than some visual issues (still legal to drive), I am pretty much the same physically as pre-onset, and recover well from flares. Time will tell though, as we all know that how I feel today and what tomorrow will bring aren't always the same. I tend to get lesions in my spinal cord, and unless those get under control, I'm in trouble in the long run. I had a huge one heal, but again, that's probably a one time thing.

My uncle is in a wheelchair now from MS. He waited 7 years to see a doctor, and definitely started DMDs too late, but also got the crappy end of the stick with his more aggressive MS. So far I have no reason to think mine will do this, but how the heck do I know? Compared to him I'm doing fanfreakingtastic, but I'm much earlier in the course of the disease.

So, I guess I'm doing better so far than I thought I would initially, but it's early in the game, so all I can do is hope that I continue this way. I am glad you are doing so much better than your mother did, but having lived her disease first hand and knowing the full ramifications of the disease when it's aggressive has to be a huge weight on your shoulders.

[woodstock]

I've only known for 10 months and just started a DMD (Copaxone) six weeks ago. The physical symptoms that led to my dx (mild numbness that lasted a week) have completely resolved so my MS didn't really become real to me until I started the Copaxone.

I do have more cognitive issues. I first brought the memory issues up to my old doctor about ten years ago (at age 39/40) and was basically told that it was a normal part of aging and possibly related to premenopause which as far as I'm aware I haven't hit yet. I just knew and still feel that my memory, organizational and other cognitive issues are not premenopause or aging. It frustrates me to not feel like I'm on top of my game and not know how to deal with that.

I'm the only one in my family that I am aware of to ever have MS. So, I have nothing to judge my symptoms or progression by.

[Thinkimjob]

The first 10 years were much better than I expected. The last four have been much as I feared they would.
It's interesting. Obviously time and experience change your view of things, but I can just about cope.

If someone had told me 14 years ago how physically stuffed I would be, I'd have believed them, but I wouldn't have understood what that really meant and what it would really feel like. I would have been scared silly, though.

But one morning you wake up and there you are right where you once feared you'd be and it's bearable.

[FL_Jhawk]

I am like you, woodstock, in that I am the only person in my family to ever get MS. Overall, my family has been very healthy going back several generations.

And, my own onset of MS has been later in life (mid 50's) and probably a progressive type, but we aren't sure and, really, does it matter? I still get around very well and my coworkers couldn't possibly have the slightest idea I have MS (unless my boss or HR blabbed about it). Some leg pain, numbness in the extremities and occassinal fatique are my main issues.

I guess being 57 now and with very mild MS and a low rate of progression is very fortunate. I am on a DMD, semi-healthy diet, lots of vitamins and other compounds suggested for those with MS, LDN and I had CCSVI, all or some of which might very well being responsilbe for a low rate of progression.

[gomer]

Well my MS venture has been a very long, but slow progression. Gave up playing baseball about age 12, had leg and vision problems in 10th grade, then developed MS related diplopia in 1968 just after HS, almost 19.

In the mid 80s I pushed that something "else" was wrong, did not know it was MS or even what MS was (there were NO treatments). The VA sent me to the shrinks, not nuts, not even depressed, but not one VA doc would seek out what that something "else" was, just take B12 for the fatigue and suggested I use a cane.

Fast forward, skipping many MS events that came and went, 25 more years. A new eye doc noted my diplopia was MS related and all of a sudden my other docs opened their eyes. A ton of testing over about 6mos and BINGO! RRMS!

When the neuro gave me the formal Dx, he said you are not surprised are you? By then he was right, it was no surprise, It just connected decades of dots.

(skipping a lot, being very brief)

Gomer Sir Falls-a-lot

[ru4cats]

June will be my 2 year "anniversary" of my diagnosis, but my neuro said I'd had it since probably at least 2005. I just returned from my walk with the dogs, and as I told my husband, "today was an O.K. day." Yesterday was a good day, and I've finally come to realize each day is different. Right hip flexor weakness (trouble walking along with balance) is my only MS symptom, and so I don't feel comfortable complaining; too many others have it so much worse. I'm doing all I can to slow down the progress (2-3 minute loss in 1 mile speed), but there is progression. However, I had almost 6 decades of a "normal" life, so I can't complain. Life is good!

[hunterd]

Originally Posted by Tawanda

After your diagnosis, I assumed you were blown away, but through the years has life with M.S. been better or worse than you originally gauged?

M.S. has been in my family for 2 generations. My mother had it for 12 years and was completely imobile, so in that respect, this disease has treated me better. Could it be the DMDs?

On the other hand, I never knew the fatigue angle. My Mom just sat still in a wheelchair not saying much, so I found out about this horrible aspect of the diseaase first-hand.

It's been 8 years officially for me, BTW.

I really didn't have any expectations, not good ones or bad ones. By the time I finally got my diagnosis I was just relieved to have an answer. I have learned after being diabetic for 40 years not to place any expectations on the future. I was diagnosed with MS in December of 2000. I would say that you would be better off than your mom because of the DMD's.

[Tomjadg]

Like ru4, my 2 year anniversary is next month.

It has been a steady decline, even with Rebif, Ampyra, and now Ty (14 months) and it is harder to walk. It was only 3 years ago that I was walking 6 miles a week on a treadmill.
Now my goal is to walk to my car to get to work.
Oh well, no control.

[Tawanda]

Originally Posted by Alicious

My uncle is in a wheelchair now from MS. He waited 7 years to see a doctor, and definitely started DMDs too late, but also got the crappy end of the stick with his more aggressive MS. So far I have no reason to think mine will do this, but how the heck do I know? Compared to him I'm doing fanfreakingtastic, but I'm much earlier in the course of the disease.

So, I guess I'm doing better so far than I thought I would initially, but it's early in the game, so all I can do is hope that I continue this way. I am glad you are doing so much better than your mother did, but having lived her disease first hand and knowing the full ramifications of the disease when it's aggressive has to be a huge weight on your shoulders.

Yes, seeing what my mother went through scared the crap out of me. However, I had cousins with the MS diagnosis 10 years before I got mine and all of them them WAY better off than my mom, plus an in-law also WAY better than my Mom. Mom apparently had the worst case scenario and my neuro. even told me as much that every case is different, even mothers and daughters.

I also think about Richard Cohen who's dad had M.S. but from all indications, his dad did not get overpowered from M.S. and it doesn't seem like Richard was nearly as freaked out when asked about the familial aspect of the disease as I was.

I guess it's however the mop flops with this disease. As a matter of fact, for Mother's Day I asked for guilt-free sleep. I slept 12 hours rather than forcing myself up and I feel great...at least for now. Even if it's for only an hour, it still is better than anything my mother could have dreamed of.

[Tawanda]

Originally Posted by hunterd

I would say that you would be better off than your mom because of the DMD's.

I have always hung my hat on that...since day one when I saw how well my cousins had M.S. cousins had faired on DMDs as they were probably the first generation to have them.

Some people don't believe in DMDs. I don't know myself-it could all just be "luck". However, if you ever had anything close to a "control group" vs. a "DMD group", you may want to look at me and my mother and take your Avonex, Copaxone, whatever...

Of course my father factors in by 50% and that's another variable I hang my hat on. His line died of old age. My poor mother was the culpret in this disease, although she passed before she knew I got it.

[LisaL77]

I am new in this club, but I thought I would feel better by now. I am going to petition my Neuro on 5/22 for another course of Solu-medrol. The nurse did say it could take 6 months to feel better.

[rdmc]

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

First 8 years, it was better than I expected, and considering I may have had this for much longer (according to neuro) I'd say the early part would be much better than anyone could hope for. But after diagnosis, for about 8 years, it was a symptom or two that were troublesome all the time, flares that were not too bad, and I always seemed to bounce back. Plus the symptomatic meds they prescribed always worked.

Last year and a half, worse than I expected because there seems to be no solutions, med wise, for the symptoms (the exception...the baclofen pump did take care of my leg spasticity and contracture.) And as I've mentioned before, sometimes I juggle so many different symptoms that I'm supposed to "keep track of" and treat as needed, that sometimes it seems overwhelming and boggles my mind. Plus it has caused me much more restriction, as far as going and doing, than I thought I would experience.

But I'm not complaining, first years were very manageable and I did more than I thought I would be able to do.

[cara_lea]

Originally Posted by Thinkimjob

But one morning you wake up and there you are right where you once feared you'd be and it's bearable.

That, is incredibly profound. yes indeed.

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 me. oh, no, not me.
:|
Setting myself up for a little life lesson there...
4 years ago I got hit with the episode that was never supposed to happen to me.
Had to let go of the ego somewhat to deal with that one. My self worth had been built a great deal upon my ability to go go go and push myself to extremes with work and play.

I remember I was so devestated when I got the diagnosis 19 years ago. I had been at dancer etc etc... I thought at the time, "well at least I'll always have my mind." (I was a pretty sharp cookie)
:|
uhm, yeah, well... about that mind....
I wasn't prepared for the cognitive stuff at all. Still adjusting to that. Another opportunity for growth, and releasing ego, right?

I knew it could be bad, didn't believe it would happen to me but now-like thinkimjob said, here I am and it's bearable.

Will I think that if I get to the point of living in a wheelchair?
I hope so, I think so.

[Cat Mom]

7 years since dx... worse than I expected.