Family Members With MS

[Deb61]

How many of you (limbo or diagnosed) have close family members (sibling, parent, aunt, uncle, or grandparent) with MS?  My neuro told me when I was diagnosed it was just about as common as being struck by lightning.

Diagnosed 2008
Sister diagnosed 2006

[srhess]

I have a cousin with MS and my husband is worried that I might end up with it too.  My cousin is on my mom's side it is her sister's daughter and no one else in our family has ever been diagnosed no grand-parents, great grand-parents, mom, siblings, no one on this side of my family has been diagnosed with MS.  So I am not worried about it but he is.  

[tingletingle]

We know that MS is more common in family members of people with MS. Some authorities say it is up to eighty times more common in first degree relatives like brothers and sisters or children of a person with MS. We now know that identical twins have 300 times the risk of other people of getting MS if the other twin has the disease. It has long been taught that if you have 10 pairs of identical twins in which one of each pair gets MS, then three of the other twins will get the disease, that is a 30% risk.

So to work out actual incidence figures for a particular case, you need to know the incidence of MS in that place. This varies enormously between populations. For instance in far north Queensland, Australia, the incidence is 10 cases of MS per 100,000 people in the population. If you are the first degree relative of someone in that population then you have 20-40 times that risk, that is 200-400 per 100,000 population, that is 2-4 per thousand or 0.2% to 0.4%. If you live in some parts of Canada, where the incidence can be as high as 500 cases of MS per 100,000 people, and you are the first degree relative of someone with MS then you have 20-40 times that risk, that is 10,000-20,000 per 100,000, or 1 in 10 to 1 in 5, that is an incidence of 10-20%. The incidence in Australia varies enormously from about 10 per 100,000 in far north Queensland to as much as 100 per 100,000 in parts of Tasmania, so the actual risk to relatives of those with MS varies ten-fold as per the calculation above. It is also important to note that this risk increases with the number of relatives a person has with MS, and of course with environmental factors such as smoking, which doubles the risk.

[lea40461]

Just to add, my birth mother also has MS. It is obviously proof that the environment plays a role as I have 100% gene pool with my sister. The studies are ongoing with much new discoveries with the complexities of this illness, but nothing solid at this point. At least there is a lot of interest and willingness for research in MS.

P.S. There are many times I would have swapped places with my twin for her to have the chance to reach her full potential.

[lea40461]

I have an identical twin sister with MS. We are now 41. She was diagnosed in our early 20's. I have had some small sensory problems such as tingling, burning, and major cramping but the neuro does not think I have MS and am as likely as anyone else to get it now. MRI's don't tell the full story and as a psychologist I can compare it to working on a diathesis model (biopsychosocial) meaning it is neither an isolation of genetics or environment but a careful combination. If you are genetically predisposed, there may be an environmental trigger involved, but it is complex. I have devastatingly seen what it has done to my sisters life but it would make me go insane if I worry about getting it too. It would affect my quality of life whether I had it or not. But reading these comments does arouse my fear. The 1 in 3 chance of getting it is quite overwhelming -- sometimes like walking a rope and feeling paranoid about every little tingle or jolt.

[naomihun1107]

My grandmother died almost 60 years ago from MS, my sister was diagnosed last year and now I am waiting for MRI to determine whether I have MS or not

[MsmsinFl]

No other cases of MS in my family, but multiple cases of autoimmune disorders.

[Eliza3]

My sister was diagnosed 1979. She is 18 years older then me.
I was diagnosed 2008.

Elizabeth

[mayperl]

No other cases of MS in my family, but multiple cases of autoimmune disorders.

[sheil0528]

I was diagnosed with MS at age 30.  My mother was also diagnosed with MS at age 30.  I have a friend who was diagnosed with MS at age 40, and her older brother was also diagnosed at age 40, two years ago.  Another friend of the family has MS, as did her mother.  Sure looks like there are many cases out there like us.

[COBOB]

My mother's brother was dx:ed about 25 years ago.

Bob

[Deb61]

Wow, Quix- you are absolutely correct!  I can't believe you thought of that article.  I didn't remember most of it, but someohow that one component I read stuck in my brain and reverberated ever since.  

Amazing!
Deb

[jumpinjiminy]

Geez. I hope that isn't the test the MS Clinic at Rush in Chicago uses to screen patients before they get to see the MS doctor. I was told you have to see the psychologist to screen for cognitive issues and he decides if you get to go on to see the ms docs or not. It has me a little worried I won't get seen at all.

[Quixotic1]

Oh, I bet I know which stupid article that was.  There is a group from the Psychiatry department at the Marshfield Clinic in (?) Wisconsin or Minnesota that put out an outrageous article called "The Differential Diagnosis of MS"  They had a dozen or more "Red Flags" and stated that if you had one of the red flags then it would be rare for you to have MS.  These red flags included 1) Strong family history, 2) age over 50, 3) history of depression, 4) few MRI lesions, 5) negative CSF, 6) no sensory "level" as seen in Transverse Myelitis, 7) atypical MRI, 8) lack of clear relapses and so on.

That article, I think, harmed us more than any other piece of garbage in the literature for the last 20 years.  They haughtily claimed that 70-some% of all people referred to any MS Clinic did NOT have MS, but rather had a psychiatric disease and that they had an assessment tool that had been verified that proved this.  We have had many vitriolic discussions of the unprofessional and harmful nature of this.

And, now, I am mad all over again.  Of course, I had SIX of their red flags - yet here I am.

Having a 1st degree relative (parent, child, sibling) increased your chance of having MS by quite a bit as the statistics above in my first post show.  However, beyond first degree the rise in risk is not great, so that includes grandparents, aunts, and uncles .  Beyond those there is no  significantly greater risk (eg, great aunts/uncles, great grandparents, cousins).

A comment about Red Flags.  That bad article misused the fed flags by saying that they are almost proof positive that you didn't have MS.  The Red Flags - and there are some - do not mean that MS is not the ultimate diagnosis.  They are just what a flag should indicate.  They indicate that the doctor should thoroughly consider the diagnostic process including those other things that might fall under the flag's diagnoses.  They are just a signal to consider all possibilities, which is appropriate.

I can't describe the horrible things I wish on those "shrinks" who arrogantly say that if you are not CLASSIC for MS, then you have a psychiatric diagnosis instead.  I fear too many of our poorer neuros read that article and believed everything it said.

Quix

[Deb61]

I have learned something from the poll.  I really did think that the odds of having a sister with the disease was so incredibly low that I even questioned my diagnosis.  I'm learning through the poll that the odds, 1 in 20, are nowhere near as slim as I thought.  

You can't say that genetics has everything to do with it, but it does (or an environmental cause) appear to have something to do with it from just the 16 of the 36 people that have polled.  That's a much bigger number that I thought.  

This poll is nowhere near scientific, but I now know that because my sister has it, it doesn't mean that the MS diagnosis was bogus as I had read in an ariticle that questions MS if a close relative has it.  Some article (I wished I had saved it) stated that if you have a family history of neurological problems, that the diagnosis should point AWAY from MS.  That was the reason for the poll.  

Thanks everyone!  
Deb

[jumpinjiminy]

My grandfather had it. There is also a familial tremor of the hands on the same side - paternal. Mom's side has diabetes and gout. So more autoimmune from that side. They don't know what I have, but it's looking like a spinal tap will be ordered soon. They just have to figure out what to test for first.

[Pablo_Morphy]

In my case, nobody in my family has so far gotten MS.  However...

When I was diagnosed with CIS, I asked my mom if she knew anybody in the family with MS.  She said no, but then told me that she heard from her mom that her grandfather had been sick with a 'mysterious illness' that had left him half-paralyzed in his late 30s, 'after being working in the backyard in a hot afternoon'.  This was in a small town in pre-WWII Latin America, so people thought he had been cursed or was just making things up.  He improved and got worse over time now and then and, after a few years, passed away.  I checked the story with my mom's uncle, who is 80 years old, and he said he remembered his father as a child, in a chair, with little leg mobility and 'always weak'.  On the other hand, my grandfather used to say that he wished none of his sons or grandsons got the 'awful illness that his father-in-law had suffered, whatever it was'.

So, go figure...

[Ufrustrated2]

from grandparents to now, i'm the first as far as i know

[Mike_Shuswap]

I've got a bunch of relatives on my Mom's side with MS, 3 cousins, 2 aunts, 1 1st cousin once removed (Granpa's brother's son) 2 uncles. i think I remembered everyone...

I also have several relatives with undiagnosed symptoms.

Oh, and 1 cousin on my Dad's side was dx'd with MS, but for some reason her dx was taken away....and not replaced with any other dx...but that's another story.

I, as well as most of my relatives on Mom's side, are in a genetics study where they take a bunch of blood and your family and personal history and try to determine why the high occurance of MS.

I sure hope my daughter's don't end up with MS! Or my Grandkids!

I think the high number of MS patients in my family may have helped my neuro dx me.

Mike

[essdipity]

Although the poll response thus far is interesting, we really can draw no conclusions from it. Those who have family with MS are much more likely to read the thread and vote than others would be.

ess

[Lulu54]

I'm late to this one - my mother's sister lived with MS for about 50 years.  I have 4 sisters, we grew up in the same household, same diet, same environment, and I  am the only one dx'd with this MySterious disease.  

One another branch of the family (grandmother's cousin) there is at least one confirmed MS patient for 3 generations so far.  

If the odds are as great as your neuro purported, I think I should buy some lottery tickets.... maybe my "luck" will continue.  LOL

-Lulu  

[Quixotic1]

I got to say - sontent-driven advertising, like they have here, is often funny.  Right after I wrote my post for this topic, I there was an "Ancestry.com" ad.  Another time some doctor was refered to as a jerk.  Immediately there appeared an ad for a recipe site with a recipe for Jerk Chicken.

q

[Quixotic1]

Genetics play a definite, but not total role in MS.  However, there are known families where the genetic link is VERY high and they study the beejeebers out of them.  They have identified at least 15 genes that seem to be involved and it may be that which of combination of these genes are inherited may play a role in who gets it.

As for identical twins raised identically, the odds rise to 1 in 3 or 1 in 4 (I think).  If it were a pure genetic problem the ration would be 1 in 1.  Also, we must explain the majority of pwms (people with ms) who do not have a close relative.

Also, within families with more than one with MS, the type, the aggressiveness and the eventual age at disability do not follow, so all of that is determined by something else.

Of interest are the groups who have NEVER been observed to develop MS, like Hungarian gypsies and a couple tribes of (??) Inuit Eskimos.  Do they have a genetic protection?  MS is uncommon, tho not impossible in those of African descent and in Native Americans.  Latinos are affected less, even when they live in the higher lattitudes.

It's a pretty puzzle and the number of studies involving genetic studies is HUGE!

Quix

[Deb61]

I sometimes wonder if genetics play more of a role in the development of MS.  I would love to see a more comprehensive study including as many people in the nation as possible with MS participating.  

My hunch is that genetics do play more of a role.  I suspect that of the people with no family members with MS that there is a great number of this population that has a family history of autoimmune disease.  In the past, these disease weren't diagnosed because of the technology of the time.

The environment of people with a gentic link of autoimmune disease or MS could also play a major factor, of course.  Two sisters living in the same place have the environment in common as well.  They typically share the same diet, the same amount of sunshine, the same exposure to chemicals/smoke, share the same childhood diseases, etc.  Perhaps the environment triggers the immune response.  Maybe it's even more of a problem when you're genetically predisposed.

If it's found that there is more of a genetic piece to the puzzle, this will give researchers more of a focal point in coming up with the cause, then the effective treatment, and possibly even a cure (which is a pretty far-fetched idea, I know).

I hope and pray that researchers and doctors continue to work as hard as the possibly can to find a cure.  I know I sound like an ad, but seeing my sister suffer with this amount of pain and being unable to walk has me going.

Thanks to people like J.K. Rowling who gave 15.4 million dollars to MS research!   We need more people like her.  That's a huge chunk of change--even for someone that is a millionaire!  

[Ndobbins]

I had a cousin & she passed on last year.