What I learned at MS seminar

[deescee]

On Saturday I attended an MS seminar. This is the short version of what I learned. Maybe others have heard the same thing or maybe something entirely different.
It has been found that disease progression starts at age 48. If a baby is dx'd with MS, they generally find the baby has had the monovirus. Demyelination occures when immune cells enter the white matter of the brain - small area at a time, stay for a short time, main target myelin, but they can also damage the nerve fibers. When the immune cells leave, there is partial or complete recovery.
MS is less progressive than previously thought. Progression is usually about 1 disability point per 10 years.
As for genetics, having MS in every generation is very rare. It is more common to have classic autoimmune diseases in every generation. They still have no answers on why people get MS.
The preventative drugs for MS do not treat the symptoms of fatigue, weakness, balance, muscle spasticity - other drugs for that. These preventative drugs all depend on the hypothesis that the immune system is damaging the nervous system.
The best thing you can do to beat this disease is to eat a healthy diet, exercise, take a multi-vitamin with calcium
(1200 mg) and vitamin D (400 iu), avoid stress, get plenty of sleep, avoid infections (get your vaccines and lots of hand washing) and do not smoke.
The best hope for a cure is to have a diversity of investigators looking into this disease.
Any other information out there that someone wants to share?

[Ironsides]

There are a few things you have passed on that may or may not be true...progression after 48...skipping a generation...is it really an autoimmune disease? Were these just anecdotal comments or based upon research?

Where was the seminar and who were the speaker(s) and who sponsored it?

[BigA]

OMG, I'm 47!!!!

Just kidding. I think that the age of 48 may have been some average on the data they were looking at. No one really knows.

The important thing you post is that the DMDs are not for treating symptoms. I'd like to add that *you can not feel MS*. You're feeling past damage.

The advice to eat well, rest and exercise is golden. I would advise that 400iu of Vitamin d is way too low, you should have it measured and take 5000iu a day.

If you're looking for a program that incorporates Diet, Exercise, stress reduction and medicine, then you should look here:

http://www.overcomingmultiplescleros...gram-Overview/

[catmama]

Source of information.....

Hello,

I have a few comments of my own regarding your post. Who said "progression begins at 48"? I was diagnosed at age 42 with RRMS and I'm now 48. If I haven't already been progressing, then what the heck have I been going through the last 6 years?

Also, if you do some more research, you may find that RRMS is related to inflammation, PPMS is related to nerve damage, that is why (for me at least) the DMDs are ineffective, as are steroids. Remember, steroids are for inflammatory processes as in RRMS. That info is straight from my UCSF MS Neurologist.

I, too would be interested to know who the speaker was at the conference, as well as the sponsor.

I usually don't go on the attack in these forums, but it sounds as though you are making a "blanket" statement for all of us with MS.

Cat

[Justsayyes]

Thanks for taking the time to post info from the seminar. You have to wonder sometimes how statistics are gathered for some of the comments we hear.

We often talk about a relationship of MS with the EB (Epstein Barre) virus, so interesting comment about babies and monovirus. Heck, it never even occured to me that a baby could be diagnosed with MS. It is so hard for many of us who have the capacity to verbalize all our symptoms.

I was diagnosed at age 48, but I'm not going to say that means anything Generalities about this disease just don't seem to fit.

[Justsayyes]

Forgot to mention, I think we need to keep in mind this info was conveyed to you at a seminar. You are not responsible for the content or validity. I do appreciate you relaying what was told in the seminar. Thanks for that!

[deescee]

Not meant to be a blanket statement

I didn't mean to offend anyone. I just went off the pamphlet that went along with the slideshow. The neurologist was from the Mayo MS Clinic. The mention about progression starting at age 48 was something I never heard before so I quickly wrote it down.
These are just generalizations - not meant to be what happens to everybody. This was another interesting slide: MS prognosis: The disease is less progressive than previously thought. MS patients are unusually healthy. Life-style issues play an important role in prognosis. If left alone, 20-30% will have benign MS, 50% will have moderate disability, 15-20% will have severe disability.
Again, this is a quirkly disease, and it affects each of us differently. I only meant to share some of what I learned.

[deescee]

Sponsor

Forgot to answer the one question: The sponsor was the National MS Society, Minnesota Chapter.

[TundraGirl]

Is the seminar you went to the symposium that had Dr. Istavan Pirko speaking? The info I found about that stated

"Medical expert Dr. Istavan Pirko will answer questions about cutting-edge MS research and therapies as well as discuss new discoveries, novel therapies and experimental models being investigated at the Minnesota's Mayo Clinic Center for MS and NCS Demyelinating Diseases."
Source: http://main.nationalmssociety.org/si...tail&id=258081

I think I may contact the MNMSS to find out more about Dr. Pirko's presentation ... if this is the direction the research is going in, I haven't heard about it yet and I'd like to know more.

[catmama]

Thanks for the update...

I want to apologize for coming on so strong. I do appreciate you taking the time to relay the information to us, and for providing your source .

Just having one of those days, frustrated by the loss of independence, among other things that this nasty disease brings.

Cat

[Jules A]

Thank you for taking the time to share this information. Unfortunately no one really has any sure answers about MS so opinions and studies will lend different results.

I'm disappointed this lecturer is still downplaying the genetic aspects but that flawed logic was a long time in the making so it makes sense that it will take a long time for everyone to get up to speed.

Again thank you. It is important to open the dialogue and if your post resulted in some of us doing our own research to either support or dispute what this seminar said that in itself is a victory.

[deescee]

To TundraGirl

Yes, it was presented by Dr. Pirko.

[0485c10]

Yes I would have liked to hear that presentation also---thats not an attack on you, thanks for posting it---i'm just in the process of listening to someone getting( or not getting) an MS diagnosis from an MS specialist & have things changed so much since i was diagnosed in 2004. that was only 7 years ago, how could they have changed so much?? I'm not that old!

it has made me realize how old/obsolete my information is and how much things have changed. i follow the new drug developments and thought i was keeping up to date...
i was diagnosed at 41 now 48, i could believe this is progressive, i won't argue that it isn't. still classified as RR using tysabri. thanks for posting i guess i have to keep my eyes open a little more--after learning all i could when diagnosed in 2004, i thought i could just slide at getting more info. maybe not. from a past article i have picked 56 as the age for going progressive for me. wish me luck at making this disease run on a schedule; like the bus schedule.

[quietposter]

I believe it runs in families especially since I, my cousin and my grandmother were diagnosed with it.

[salamandertom]

It is very a very argued topic among the MS community about the genetics - especially among doctors. This doctor clearly believes what he said. All doctors have opinons about data. They will interpret and pass that on the way they see fit. They disregard things and skew facts. I mean how many times have you had a doctor backtracking when you question them hard about something? I have them doing it all the time. THey are just people, and they will have varying opinions.

I am progressing, I am not 48. LOL.

Thanks for posting that, I really appreciate it. I would love to go to some of these talks.