how long did your ms remain "mild"

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how long did your ms remain "mild"

Postby arai » Sun Feb 06, 2005 12:36 pm

I was diagnosed with ms 2 years ago after just some mild sensory stuff (left side a little numb), a bit of fatigue, and since then nothing, other than feeling off once a week after my avonex injection.

My question is this, how long did your ms stay mild? I'm putting large chunks of my salary towards retirement funds and towards paying off my house. my feeling is that I'm doing a damn good job of saving for the future. My wife however wants even more, like if we get decent tax returns that we should put it towards the house. this is where our opinions differ.

I think that I want to use that money to enjoy my life now, I mean lets be real, I have ms, and while everything is good now I want to make sure I can enjoy life. I mean, ms catches up with everyone eventually doesnt it? I guess thats my main question.

I feel like she doesnt understand my desire to enjoy my life now and dont know how to tell her that I'm not being morbid, I just want to insure that I get to accomplish some things in my life. its not like I'm not putting towards my future either, I put over $11,000 this year into my retirement funds, and I'm paying off more than required on our mortgage. Did I mention I'm only 25? anyway just venting a bit I guess. I'm sure theres some kind of balance, I feel I can put towards my future without ingorning the present, and I am worried that ms is the kind of disease where I wont be able to fully enjoy my future.

does anyone know if mild ms is still the type of thing that will catch up to me in my future? am I justified in trying to enjoy the present, even if it means paying off my house in 22 years instead of 20?

thanks
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Postby OddDuck » Sun Feb 06, 2005 1:16 pm

Hi, arai!

Personally speaking..........I totally agree with you and your thoughts regarding balancing your present life and lifestyle with your "future".

You know what? I'm going to give you a link to a presentation that was given by a neurologist I know (that I coincidentally posted not long ago in another thread) that I think would be good for your wife to listen to. I think it might put some things into perspective for her (and you) and may help answer some of your questions. It's truly worth listening to the whole thing.....including the questions and answer portion at the end.

It's at: http://www.multiplesclerosis.com/admin/ ... &zoneid=22

It's the presentation called "The Myth of Mild MS" by Samuel F. Hunter, M.D., PhD.

During his presentation, he gets into specifics regarding "mild" MS, and percentages of progression, etc.

Deb
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Presentation Link

Postby SlowI » Sun Feb 06, 2005 6:45 pm

Deb,
Thanks for the presentation link. I had not been to that site before, so I found the information sobering, but well presented about the possibility of "Benign MS". Better to know that in advance.

I'm an Avonex-er, so I was surprised to see the comparative data between the Betaseron and Avonex. I guess every CRAB has his/her own data to talk up.

Kyle
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Postby Arron » Sun Feb 06, 2005 11:43 pm

One of the main points from the presentation-- "benign MS is not really benign"-- even seemingly benign MS usually becomes something worse in 10 years or so. MS is best treated early and not being on therapy is a risk.

For those that care, this presentation was funded by Serono (Betaseron). They lead the presentation by saying it was funded by an "unrestricted" grant, but then the therapy the neurologist talks about (to the exclusion of others) is Betaseron... :roll:
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby OddDuck » Mon Feb 07, 2005 4:25 am

Arron,

Yes, I know (regarding your points about Betaseron), but I also know Dr. Sam Hunter personally (he's more open minded than it appears. Remember, he's the doctor who discussed and prescribed desipramine to me, and HE'S the one who had me do all the research on it in the first place, found no flaws in it, and he's the first one who said we definitely needed to do more research studies on it.) (If anyone wants to check Dr. Hunter out, his website is at www.neurosci.us He's the one who worked with Rodriguez and Lucchinetti at the Mayo, and worked with Sriram and Moses at Vanderbilt.)

Anyway, the main points I was stressing were the data he presents regarding benign MS and mild MS, etc. He does, though, believe in early treatment (but as I said, he's a little more open as to what the early treatment is that you should use. He tends to actually prefer Rebif for a lot of people. He recommended Copaxone, though, to me, until we experimented with desipramine.)

If you listened closely, Sam does at one point say quickly how the interferons don't work for long. I found that interesting and surprising that they left that "opinion" of his in the presentation.

Anyway, purely because I know Sam, and his background in MS is so vast and impressive, etc., was why I referred arai to his presentation. His "numbers" and percentages regarding when, how, etc. benign and/or mild MS tends to become worse (statistically) would be correct. His practice consists of somewhere around 600 MS patients (to my understanding) and he has been specializing in MS since he started med school. Some of the research he did back in the 80s in MS found some of what some researchers NOW are claiming as "new" discoveries.

So.............would his information be reliable? I'd have to say yes. (And if ANYBODY gives/gave Dr. Hunter a "hard time", it was me.)

:wink:

Deb
Last edited by OddDuck on Mon Feb 07, 2005 5:00 am, edited 2 times in total.
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Postby OddDuck » Mon Feb 07, 2005 4:40 am

Kyle,

Yes, as far as the CRABs go, you'll see data comparisons between them all over the place. I tend to ignore those anymore.

I did also note, that Dr. Hunter basically said he didn't agree with "combination" therapy, either. (Which also wouldn't be the best thing to say when you're in alliance with any pharma. The pharmas WANT the neuros to recommend combination therapy. More money for the pharma. Sam takes a bit of a risk by saying in the presentation that he doesn't recommend combination therapy with the CRABs. Which I can tell you that is the truth. He doesn't. Especially in light of the fact that one of the clinical trials that he is heading up IS a combination therapy trial of Copaxone with Avonex! :wink: )

Dr. Hunter has "grants" from ALL of the pharmas. He is currently doing 4 different clinical trials sponsored by different competing pharmas. Politically speaking, I personally think he walks a fine line. So, is he really partial to one CRAB over another? It depends on the condition of the patient as to what is recommended.

Deb
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enjoy

Postby jaycee » Thu Mar 03, 2005 11:00 am

Please enjoy your life now. Don't blow all your money and do plan for the future but my MS has been mild for 14 years and now is starting to take off. I wish I had travelled more when I was feeling like it. My husband is the one who wants to spend money and I don't. Now I wish I had. We are approaching retirement and can't enjoy retirement-type things.
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Postby Annette » Thu Mar 03, 2005 1:31 pm

I second what Jaycee suggested. I was left untreated for many years - having being diagnosed as 'Benign' then woke up one day a couple of years back Secondary Progressive. That's when my neuro's started taking me seriously and prescribe drugs for me.

I wish I had the spare money to do more 'recreational things' and with hindsight would have done a lot more when I was well. One MSer uses a footnote signature I like that goes something like this " Life is not about arriving at your grave in a well-preserved state but about skidding in sideways saying 'Holy shit! What a ride!" That sums things up for me and personally I think we should just go for it ... I mean we could still get hit by a bus tomorrow couldn't we? Well, I could if you ever saw me cross the road!

Take care
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Postby stsolakos » Fri Mar 04, 2005 1:14 am

Sorry for being pessimistic, but I completely disagree. We COULD be hit by a bus TOMORROW, but we HAVE ms TODAY. And living with it is nothing more than a continuous unfair battle that it is more than sure than it is NOT going to be victorious for us. Even if it is, the losses will be great.

Once again, sorry for being pessimistic (realistic, maybe?) but forget your life for the next 10 years or so. Thanks God that we will one day die and get rid of ms, rebif and other stupid medicines, and the smiling faces of people around us that THINK that they give courage to us. For everybody WE are a problem, not ms. Everybody sees the world through his own eyes and since he is healthy, he thinks that everybody is and criticises anybody that wants to give up. Why? Why? Why? Courage for what? Anyway, that bus accident looks like a gift to me.

Are there any others that do not have the motive to fight anymore? Why is it that bad giving up?

Stavros
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Postby Annette » Fri Mar 04, 2005 12:55 pm

Stavro,

Your post could well have been one I could have written a year ago when things were particularly bad for me - I was having a really bad time on Rebif which actually worsenend my condition and left me pretty depressed. I guess the state of our condition defines very much how we currently feel about it but I decided to try other options and found a 'recipe' that works for me and has brought me out of my black hole.

I disagree with you about everybody is 'healthy' and sees the world that way. Health issues catch up with us all at some point, it's just a continuum that's sometimes better and sometimes worse. I mean even the 'health freaks' out there have to die of something some day.

I do agree that people see the world through their own eyes though and for me personally having worked with terminally ill children and other very sick individuals who never got to my age helps me get a better perspective on things.

There are so many more factors than just my current health that give me the will to live rather than to give up but then again it's a personal choice.

Annette.

PS Eisai stin Ellada Stavro; Ego meno edo - einai pragmati katapliktiki xora!
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sick or not

Postby ropingheeler » Fri Mar 04, 2005 1:18 pm

even if you don't have ms you sould live every day like its your last as for going and doing a little extra while you still can GET GOING have fun all the money in the world hasn't cured ms yet and you can't take it with you so go spend a little tell your wife you would like to walk down the beach hand in hand not her pushing you
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Postby Annette » Fri Mar 04, 2005 2:45 pm

even if you don't have ms you sould live every day like its your last


I agree and as an aside I came across this which is worth a read:

Imagine there is a bank that credits your account each morning with 86,400. It carries over no balance from day to day. Every evening deletes whatever part of the balance you failed to use during the day.

What would you do? Draw out every cent, of course! Each of us has such a bank. Its name is TIME. Every morning it credits you with 86,400 seconds. Every night it writes off as lost whatever of this you have failed to invest to good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day. If you fail to use the day's deposits, the loss is yours. There is no going back. There is no drawing against the "tomorrow."

You must live in the present on today's deposits. Invest it so as to get from it the utmost in health, happiness, and success! The clock is running. Make the most of today.

To realize the value of ONE YEAR, ask a student who failed a grade. To realize the value of ONE MONTH, ask a mother who gave birth to a premature baby. To realize the value of ONE WEEK, ask the editor of a weekly newspaper. To realize the value of ONE HOUR, ask the lovers who are waiting to meet. To realize the value of ONE MINUTE, ask a person who missed the train. To realize the value of ONE SECOND, ask a person who just avoided an accident. To realize the value of ONE MILLISECOND, ask the person who won a silver medal in the Olympics. Treasure every moment that you have, and treasure it more because you shared it with someone special, special enough to spend your time. Remember that time waits for no one. Yesterday is history. Tomorrow is a mystery. Today is a gift, that's why it's called the present!

I have recently been touched by a number of deaths and realised that time is precious for us all. To finish .... 'those who complain about their cage lose valuable time in learning how to unlock it'.
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Postby Mary » Fri Mar 04, 2005 3:18 pm

I for one know I will take my life when the MS gets bad. I don't want to be a burden. I don't want to live in a wheelchair. I don't want to be fed or diapered or dressed. I've already been an infant. I don't want to feel humiliated or embarrassed for myself or the poor soul who is at the other end of the diaper. I don't want to lose feeling or not be able to think clearly and for myself. I'll choose death instead. Seems more peaceful all the way around and for everyone involved in my life.

This is no comment on anyone else's choices, it's just my choice...
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Postby MOMTO3 » Fri Mar 04, 2005 3:55 pm

AYLISH, MAY I ASK YOU THIS, DO YOU HAVE FAMILY AROUND YOU? HUSBAND CHILD, SISTER BROTHER MOTHER FATHER?

LET ME TELL YOU ABOUT MY EXPERIENCE IF YOU DONT MIND, MY MOTHER HAS RSD(REFLEX SYMPATHETIC DYSTROPHY) WHEN SHE FIRST GOT IT, IT WAS IN HER LEG AND BEGAN TO SPREAD THEN 2 YEARS AGO, SHE HAD A FALL IN THE SHOWER, WHICH PUT HER PERMANETLY IN A WHEEL CHAIR, SHE IS NOT PARALYZED, SHE CAN FEEL HER EXCRUSTIATING PAIN EVERY SECOND, AND SHE TOO HAS THESE FEELING, SHE FEELS SHE IS A BURDEN, AND HER DISEASE CAUSED HER LEG TO BECOME 6 TIMES THE SIZE OF NORMAL AND PURPLE, SO SHE DEALS WITH THE EMBARRASMENT ISSUE ALSO, AND I HAVE TO SAY IF SHE TOOK HER LIFE IT WOULD BE THE END OF MINE, FOR I DONT LOVE HER FOR ANY OTHER REASON THEN SHE IS WHO SHE IS, I DONT NEED HER TO DRIVE ME OR WALK ME ANYWHERE OR GET ANYTHING FOR ME FOR ME TO LOVE HER I NEED TO KNOW SHE IS THERE AND SHE LOVES ME. THAT WHENEVER I CALL HER THE 40 TIMES A DAY FOR ADVICE SHE WILL BE THERE TO LISTEN.AS MUCH AS YOU FEEL LIKE YOU ARE A BURDEN OR UNLOVED, KNOW THAT SOMEONE OUT THERE FEELS THE OPPOSITE, YOU ARE NOT ANY LESS IF YOU NEED HELP. EVERYONE SOMETIME NEEDS HELP. PLEASE LET THEM TAKE THE CHANCE AS MUCH AS YOU FEEL LIKE THEM HELPING YOU IS A BURDEN TO THE PERSON HELPING THEY MIGHT FEEL NEEDED. PLEASE HANG IN AND TRY TO KEP POSITIVE, ENJOY EVERYDAY THAT U CAN SEE THE SUN AND MOON, THAT YOU CAN SMELL THE RAIN OR A FLOWER, KEEP COMING BACK HERE AND ENJOY THE WONDERFUL PEOPLE ON THE BOARDS. AND IF YOU NEED TO VENT WE ARE HERE FOR THAT TOO. TAKE CARE AND KEEP IN TOUCH
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Postby Tweeker » Mon Mar 07, 2005 1:12 am

Hi Arai

Your simple question - how long did your ms stay mild - is kinda difficult to answer. Sorta depends on one’s conception of “mild.”

You said, “… ms catches up with everyone eventually doesn’t it? I guess thats my main question.” Absolutely nothing concerning any particular person’s distinct battle with MS is eventual. Ya won’t know what’ll occur in your body until “it” happens. That’s the rub of MS.

My advise to you is to ditch your preconception(s) of this disease. No other disabilities may materialize. Moreover, should you dwell on “what if”, MS will claim yet another “poor me” victim.

It may strike you as cavalier but, on the stage of world events, our personal and individual MS is inconsequential. Do what you can do now. If things change, do what you do can then.

And finally: Your wife is the most understanding person you’ll ever experience. Practice every day the art of unconditional loving and listening to your spouse. She may have some valuable insights from which you can learn.

Good Luck,

Tweeker
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