This Is MS Multiple Sclerosis Knowledge & Support Community

As for the forum being corrupt, the moderators are pro CCSVI so I should imagine Lyon or Scorpion would have more luck following that line.

yes, pro investigating ccsvi certainly. not personally in line for testing or treatment however. can't speak for NHE myself.

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Even though my wife's MS has proven mild so far I've read lots of accounts which started the same but eventually started snowballing.....Harry's wife is one if I remember correctly.

That's correct Bob...Marg went some 20 years after her initial severe MS attack, without any meds, before the disease started its continuous and relentless progression. She got about 18 months reprieve when she used Prokarin but breaking her leg in a fall really set her back.

But everyone here should remember the road of Copaxone, one of today's main CRAB drugs. Its initial trials showed no statistical significance. Teva ran more trials and this time dredged, massaged and manipulated the data to eventually show a level of efficacy that was barely above the minimal requirement. The drug was given Orphan Drug Status because it wasn't an interferon and didn't have to surpass the data for Betaseron or Avonex.

After the drug was approved, the Cochrane Group analysed all the trial data and determined that Copaxone was "useless in the treatment of MS."

Yet, you didn't see the naysayers in the world of MS medicine come out and try and discredit it and say it was quackery. They let Teva do what they had to do to gain FDA approval.

It's too bad these same people don't let CCSVI research do the same.

Harry

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Thanks Harry, I was wondering if you'd notice this out of the way spot! If nothing else I'm banking on my wife being so old when diagnosed (46.....4 years ago) that even if NOTHING beneficial for MS'ers materializes before we die of old age, it'll at least that much less of her life affected by increasing impairment.

Diagnosed at 46 is considered quite late in life for MS but certainly not uncommon. From what I have read and seen, those not diagnosed until this point in their lives, generally have a more mild form of the disease. Hopefully that is the case with your wife but as we all know, nothing is certain with this lousy disease.

Take care.

Harry

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Isn't that the truth! From what I read after her diagnosis I was under the impression that MS progression seemed to slow later in life if you'd had it for a while but a later diagnosis, on average, signaled a more aggressive path?

With MS so often our opinions are attributable to the study article we choose to put faith in

One question I've never asked you...prior to your wife's diagnosis, did she ever show any symptoms of MS and how long ago. I ask this because often, patients will have had a very mild form of the disease for several years but not ever had it diagnosed.

Harry

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Still, her MS is weird. Even through she's been diagnosed by 3 world class neuros, she can walk me into the ground and has more energy than any 3 people I know. She bitches about being tired as most people do, but I can't imagine it would be considered "fatigue".

I'm thinking that she indeed has had MS for a very long time but fortunately it appears to be a mild form of the disease. While there are no guarantees, I'm going going to give you an opinion based on my years of following MS....your wife will unlikely progress to any kind of severe disability. And I really hope that I'm right on that one!

Harry

Lyon,

My understanding too is that the later you get it, the more rapid is disease progression, generally speaking. Of course that is just statistics, every person is different.

My MS also started off as "mild". I ran about 5 miles a day for at least the first 10 years with MS. I took nothing for it during the entire time I maintained all abilities.

Now, I can barely walk a block and my brain looks like cheesecake on MRI.

In my own experience, present circumstances in no way predicts the course the disease will take. MS can change on a dime, for absolutely no known reason, and can progress rapidly regardless of its previous "pattern". It did for me. I have absolutely no way of knowing if I would have started disease modifying drugs when it was mild whether it would have done anything. My neurologist was happy with me not taking them, although a second opinion from another neurologist said that I should absolutely have taken them. Of course, I never can know now what an alternate course would or would not have done.

That's why Montel's attitude irritates me. It is very easy to attribute good health to something you're doing or your attitude. Until your health changes, and you haven't changed anything to make it so, and there's nothing you can do to alter its new course and downward spiral. That's when you stop saying you did something or your attitude impacted you, when your health changes without any corresponding change in attitude or behaviour.

If I knew then what I know now, I probably would have been a little more proactive at trying to impact disease progression earlier before it worsened. It might not have worked, but at least I would have known that I did my best. JMO.

eric593 wrote: That's why Montel's attitude irritates me. It is very easy to attribute good health to something you're doing or your attitude. Until your health changes, and you haven't changed anything to make it so, and there's nothing you can do to alter its new course and downward spiral. That's when you stop saying you did something or your attitude impacted you, when your health changes without any corresponding change in attitude or behaviour.

Exactly, Eric. I have had MS for last 17 years. I have been a sport and fitness freak since my school days. When MS struck me, I stopped all this mainly due to depression, thinking about my future etc. It took me almost 8-9 years to pick myself up and be bit positive. For last 5-6 years I have been regularly exercising (almost 7 days a week, 45 minutes a day, a bit extra over weekends).

I don't have major disability. My major issues are with headache, bodyache, stiffness, fatigue, brain fog. I know for sure that my exercise routine has helped me but whether that is the reason for me not being disabled?. I am not sure. I think I have been plain lucky (of course, relatively speaking) that the disease has not been aggressive.

Its easy for people who are doing relatively okay to give long speeches but the whole world changes when aggressive form of MS hits you.

Of course, these are my own thoughts ... I am not saying dont have positive attitude or don't exercise. All I am saying is that people who are in wheelchair today is not because they did not do these things. I don't think exercise, attitude stand a chance when they are left to face with aggressive form of MS.

sbr487 wrote:I am not saying dont have positive attitude or don't exercise. All I am saying is that people who are in wheelchair today is not because they did not do these things. I don't think exercise, attitude just dont stand a chance when they are left to face with aggressive form of MS.

Yes, certainly exercise and a positive attitude are good for health generally. No question. No one is saying don't do these things.

I know I exercised regularly. Up until the day that I could no longer exercise. So exercising did nothing to prevent MS from progressing to the point that I could no longer exercise the way that I had been. And having the ability to exercise even with MS for a long time in no way predicted a milder course of MS. Because I did it right up to the point that MS prevented me from doing it, and doing it certainly didn't stop MS from progressing.

Thanks, Eric. I just edited this portion just to make sure there is no mis interpretation:

I don't think exercise, attitude just dont stand a chance

to

I don't think exercise, attitude stand a chance

eric593 wrote:If I knew then what I know now, I probably would have been a little more proactive at trying to impact disease progression earlier before it worsened. It might not have worked, but at least I would have known that I did my best. JMO.

What do you think you might have done differently?

patientx wrote:

eric593 wrote:If I knew then what I know now, I probably would have been a little more proactive at trying to impact disease progression earlier before it worsened. It might not have worked, but at least I would have known that I did my best. JMO.

What do you think you might have done differently?

I was going to ask this as well.

And for Harry: My husband was diagnosed in 2002, but I noticed things from when I met him in 1991....they just didn't seem important enough to wonder about. He certainly had a limp, he didn't acknowledge. An eye problem the doctor thought came from a football injury. Lots of things...no need to list them now, but the point is, he surely had "MS" before he reached 20. Although it would be strange to say that, too, when some neurologists have said he doesn't have MS...he certainly doesn't have multiple scars...very few of those, so I guess he has FS, which could stand for a lot of things...