Study: Family Risk for Developing MS

[BigA]

I'm not sure this information is meant to be useful to us, but contributes to our understanding of the disease. Medical records in Northern Europe can be an excellent way to teasing out causes. Of course statistics aren't that useful anyway on a personal level. I'm in the worse category (male, 45+), but that has no bearing on my personal course any more than average income in my post code has on my income. Finally, this is not a zero-sum game. A dollar (or euro or kroner) spent on statistical research is not a dollar less to spend on a cure. One of the first thoughts of anyone when diagnosed is whether their children will get it and it is helpful to know *something* about the probabilities.

I give my children 2k vitamin D each day in the hopes of preventing them getting MS.

[Tawanda]

I give my children 2k vitamin D each day in the hopes of preventing them getting MS.

I do too, just upped it from 1K. I take 5000 K.

Does it matter? I don't know. I grew up on bad latitude lines, but I always had plenty of vitamin D in my diet and still got this sucker!

[onlyairfare]

It is very difficult to treat a disease, let alone cure it, without knowing the cause.

To the extent that we connect a particular gene (or 150 of them) to MS, and to the extent that we understand the function of that gene, science will be all the more likely to use that information toward fashioning a cure.

The bench research going on to study genes and other MS factors is far less prominently covered in the news than drug research, since drug trials are run on people and patients who will post about it, and results will be published in journals that practicing physicians actually read.

Fortunately, that does not mean that a search for a cure is not going on.

[jmp77]

Family risk and telling others comment

I just read the MS World email links to the two topics~"do you tell..." and "Family genetic links". I may have a unique perspective.

First of all, I did make the mistake of telling before I realized it may not be in my best interest~~family wise.

However, a not so long ago reunion alleviated my concerns on this because 'family' involved not only deny that I have MS; but I also learned there that I didnt really get a broken leg as a child and the cast was put on to appease me. Most interesting fact on all this: the contributing family member is a physician.

:-)

[Imagine]

Speaking for MY family...

Tawanda- as usual, we're on the same page. 3 different neurologists told me that the vast majority of their pts w/ms have relatives with ms.

My father (honestly/literally) has over ONE HUNDRED 1st cousins. My grandmother and one of her sisters had a double wedding with 2 brothers. My grandmother had 8 siblings and my grandfather had 9 siblings.

Sorry, I know this is complicated. Now, the 2 sisters who married 2 brothers had 17 children between them. The OFFSPRING of their children fall into the "family cluster." I have several cousins, all of whom are children of the "double 1st cousins," who have ms; 3 with lupus; and 2 with an autoimune disease that (surprise!) I cannot remember the name.

ANYway, all of us who've been diagnosed with an autoimune disease are female and were in our late 30s when diagnosed.

My grandmother remembers family members "being sick all of the time."

It is my opinion, and the opinion of my ms specialist, that the ms I have, absolutely came from genetic coding on my father's side of the family.

I'm oh so exhausted so I hope that this novella made some sence. Wishing everyone a peaceful day

Shalom, Suzanne

[Tawanda]

Tawanda- as usual, we're on the same page. 3 different neurologists told me that the vast majority of their pts w/ms have relatives with ms.

My father (honestly/literally) has over ONE HUNDRED 1st cousins. My grandmother and one of her sisters had a double wedding with 2 brothers. My grandmother had 8 siblings and my grandfather had 9 siblings.

Sorry, I know this is complicated. Now, the 2 sisters who married 2 brothers had 17 children between them. The OFFSPRING of their children fall into the "family cluster." I have several cousins, all of whom are children of the "double 1st cousins," who have ms; 3 with lupus; and 2 with an autoimune disease that (surprise!) I cannot remember the name.

ANYway, all of us who've been diagnosed with an autoimune disease are female and were in our late 30s when diagnosed.

My grandmother remembers family members "being sick all of the time."

It is my opinion, and the opinion of my ms specialist, that the ms I have, absolutely came from genetic coding on my father's side of the family.

I'm oh so exhausted so I hope that this novella made some sence. Wishing everyone a peaceful day

Shalom, Suzanne

Hi Suzanne!

Nice to "see" you! This is OT, but I did the 23andMe DNA and
discovered I am part Ashkenazi Jewish, so "Shalom" back at ya!

[Imagine]

SORRY, SORRY, SORRY...

Hi Suzanne!

Nice to "see" you! This is OT, but I did the 23andMe DNA and
discovered I am part Ashkenazi Jewish, so "Shalom" back at ya!

HI TAWNDA! i AM SO VERY SORRY THAT YOU POSTED THIS IS IN FEBRUARY AND i'M JUST NOW SEEING IT!!! [I]MAZEL TOV TO YOU MY DEAR FRIEND BE IN TOUCH SOON. SHALOM, SUZANNE

[fishead]

All of this information is great, but it would be better if medical science was able to use this info to develop a 'cure'. I understand the value of investigating the causes of the disease but it shouldn't divert focus from working feverously to find a 'cure'.

THANK YOU for pointing this out!!!!!!!!!!

[Tawanda]

HI TAWNDA! i AM SO VERY SORRY THAT YOU POSTED THIS IS IN FEBRUARY AND i'M JUST NOW SEEING IT!!! [I]MAZEL TOV TO YOU MY DEAR FRIEND BE IN TOUCH SOON. SHALOM, SUZANNE

Hahahaha!

Is there no race, creed, or color that is spared from this stupid disease? Glad to hear back from you anytime, Suzanne!
Peace,
T

[Myoak]

Glad this thread popped up again. Sometimes we get the mistaken impression that if we have a genetic predisposition we are rafting down a river of no return with little control.

First point to make is that EBV virus promotes genomic instability: http://www.pnas.org/content/106/7/2313.full
Doubtless there are multiple factors which contribute to genomic instability, EBV is only one.

But the better point is that although genetics play a role it does not appear true that “multiple sclerosis is largely caused by genetic factors”. 75% of identical twins do not have co-occurrence of MS so largely (even in 75% of identical twins), environmental factors trump genetics as causing MS.

Recently, a very good article came out of the U of Wisconsin which I quote extensively below:
http://www.biochem.wisc.edu/faculty/...r_20140605.pdf

“Lewis Thomas wrote “For every disease there is a single key
mechanism that dominates all others. If one can find it, and then
think one’s way around it, one can control the disorder.”

What is the single key mechanism that dominates all others in MS?

The demyelinating disease process appears to develop in
individuals carrying genetic risk factors who are exposed to
particular environmental factors. MS clustering within families signals a genetic contribution to MS. However, 75% of identical twins do not have co-occurrence of MS, and the genetic risk factors identified to date have only a modest influence.
Thus, environmental factors play a large, causal role in MS through their interactions with genetic factors. The “single key mechanism that dominates all
others” must be a disease threshold-setting, environmentally directed mechanism.

Evidence points to a sunlight-linked factor.

High sunlight exposure correlated with low MS risk globally. Young immigrants carrying genetic risk factors substantially reduced their MS risk by settling in regions with ample compared to limited winter sunlight. After long dark winters in high latitude regions, MS patients experienced a surge in brain lesions and disease relapses.

Thus, a sunlight-linked factor trumps genetic factors in determining MS risk and disease activity.

Curiously, Northern Norwegians who consumed fish as a dietary staple had a lower risk of developing MS than their Southern Norwegian countrymen who consumed less fish. Thus, fish consumption compensated for a lack of winter sunlight.

If we aspire to control MS, we must identify the factor common to sunlight and fish.

Vitamin D3 may be that factor, the major conduit for the
protective actions of sunlight and fish consumption in MS.
Sunlight catalyzes vitamin D3 formation in the skin, and fish oil is a rich source of dietary vitamin D3. Vitamin D3 is converted into 25-hydroxyvitamin D3 (25(OH)D), an inactive hormone precursor, and finally into a hormone, calcitriol." End Quote

[Jules A]

Thus, a sunlight-linked factor trumps genetic factors in determining MS risk and disease activity.

Thus, fish consumption compensated for a lack of winter sunlight.

Although I wish it was this easy the simplistic blanket statements like the one above really take credibility from this author's work credibility, imo. Especially because the the reference the author cited was from about a million years ago, as noted below:

8. Swank, R. L., O. Lerstad, A. Strom, and J. Backer. 1952. Multiple sclerosis in rural Norway its geographic and occupational incidence in relation to nutrition. N Engl J Med 246: 722-728.

[Tawanda]

However, 75% of identical twins do not have co-occurrence of MS, and the genetic risk factors identified to date have only a modest influence.

...meaning 25% do have a co-occurrence of MS? I personally find that to be a significant amount and take no comfort in that statistic (BTW, when it happens to be you or your loved ones who are "rafting down the river of no return with little control" because of genetics, it matters: me, my mother and 3 first cousins on her side have all been afflicted with MS )!

[onlyairfare]

I think most people would consider a 25% incidence to be significant.

What is interesting in this context of the genetics of MS is that identical twins have identical genetic material. Despite this genetic identity, "only" 1 in 4 identical twins of an MS patient will have the disease also. If MS were mostly genetically determined, then it would be expected that there would be nearly 100% concordance between identical twin pairs.

Nothing mentioned here about the severity of illness. Some people have severe disability while others have prolonged (indefinitely in some cases) benign MS.

Since there are 150 chromosome factors linked to MS, it's quite possible that MS is more than one disease, or that some chromosome factors correlate with milder disease, some with more severe; some may correlate with RRMS, some with PPMS...

There is so much that stubbornly remains unknown, despite hundreds of years, millions of patients, and billions in research.

[Tawanda]

I think most people would consider a 25% incidence to be significant.

Since there are 150 chromosome factors linked to MS

150 chromosome factors (and counting...as I remember when there were only 6 identified) is also significant IMHO.

[Myoak]

Beginning this thread the original article stated MS is largely a genetic disease. If MS is largely a genetic disease why do only 25% of identical twins have co-occurrence? Largely to me means the greater part; over 50% means largely to me. Most would agree that 25% is not the large part, 75% is the large part. The statement that MS is largely a genetic disease does not hold up in simple math.

However, the genetic component to MS is extremely important, 25% is very significant and never more so when our own families are dealing with multiple tragedies of MS. Like Tawanda, there are several members in my own family with MS. That is what motivates me to study this disease relentlessly. I believe the principle is eternal… seek and you shall find. So I hunt as a scout seeking the best way forward for loved ones. Many others do the same.

Too often we get fatalistic about genetics. You know… it’s in the genes… nothing we can do about it. That belief presents a stumbling block to better health. My reason for prompting discussion about genetic factors versus environmental factors is that the latter offers obvious opportunities for modification. There are common sense things we can do… stop smoking, improve diet, exercise, and Vitamin D supplementation. But there are many, many more modifiers with varying degrees of recognition and debate; too many to mention in one post.

But genetics also are modifiable to some degree as we see in the study I referenced relating to EBV contributing to genome instability.

As significant as genetic factors are in MS (25% of identical twins) the larger part, (75% of twins) is dependent on environmental factors. Those can be modified and will be going forward as researchers provide evidence for doing so.

Next post I’ll link an interesting study in EAE (animal model of MS) which found that a single dose of calcitriol (vitamin D active hormone) followed by ongoing vitamin D3 supplementation was more effective than standard MS drugs now being used.