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Is MS really that rare?
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Is MS really that rare?

I've been wondering why if there are only 400,000 cases of MS in the US, do I know so many of them?  Excluding the fine people I have met through this forum and local MS support groups, I know the following:

our former university president, who is still active on our campus
my son-in-law's sister
two professors in my building - one in my dept. and one in History
the father of a graduate assistant in our dept.
the mother of a graduate assistant in our dept.
an undergraduate student
And of course my aunt, who is no longer living

Incidentally, I can find no common thread between all of us, other than living in the midwest now, but not necessarily as children.

Is it unusual that I know so many MS patients or do others find a similar pattern?  

just wondering,
Lulu

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667078_tn?1316004535
I think this is one reason the MS Society is pushing Congress for a National Registry of MS and Parkinsons Patients. No it will not be so specific the Government has all of our personal information. It will give an accurate count of how many people  have MS and see if any geographic patterns emerge.

Alex
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359574_tn?1328364024
I wonder that, too.

The mom of a coworker I had in the 80's.
A coworker of mine in the 90's.
My former pastor's wife.
My former next door neighbor.
A current coworker's husband (OK, I've never met him.)

All of these in KS and MO
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751951_tn?1299202836
Laura Lu, I have no idea.  I met a woman with MS when I was hospitalized with a kidney problem, almost 23 years ago.  After I was discharged, I did not maintain any contact with her.  A coworker tells me that his sister has MS, but she and I have never met.  That's it, as far as I know, and as you're aware, we're nearly neighbors, probably less than 100 miles from one another.  My mother was from this area, with several generations of Irish-heritage native Buckeyes preceding her.  Same with Dad (born in Cleveland) on his father's side, with many other relatives in the regions from South Dakota through Ontario, although his mother was born in Germany.

I'll suggest that there is likely wide variance between the numbers that the average person knows, and that you very likely know more because of your personal interest in the topic.  My coworker would likely have never told me that he has a sister with MS, had I not mentioned it as a possible cause of my ongoing illness.  That would leave me with one lifetime MS contact, outside MedHelp, and I'm no spring chicken, as you know.  You, being pretty clearly diagnosed, are more likely to hear of others in the same boat, because your nearest non-MS acquaintances would think of you when they hear the disease mentioned, and might very well be more inclined to mention their other contacts with MS.

Interesting question, though.  From where does the 400,000 number come, and is that dx or suspected, projected or based on credible reporting systems, and is the number current or from some time in years gone by?

Just my (increasingly random) thoughts.  Peace.
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Avatar_f_tn
Actually, I think the 400,000 number, or 1 in 750 or whatever it is, tends to be misleading. The implication is that MSers are scattered evenly among the US population, when in fact that's far from true.

If one is from Northern European extraction, female, etc., etc. we know that the chances of having MS greatly increase. If we live in an area with a high percentage of people meeting these criteria, it is that much more likely that we'll know people with MS.

Actually, Lu, who says MS is rare?  We have one reason to be glad it isn't, and that is that the pharmaceutical industry would neglect us. Lots of people with diagnosed MS aren't on one of the injectables, but there's still plenty of business for 4 major types.

ess
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867787_tn?1318939830
I have 3 cousins(two are twins), my hubbys aunt,2 women I go to church with,another man at church, my hubbys cousin, & it seems since I have had the possibility of MS looming over me that I hvae people coming out of the woodwork with it! That not counting all of you wonderful folks I've met here, thats just in my general area. I have been here in KY all of my life so I don't know if environmental factors play in or what. I have noticed for instance tha there was a rash of women in my small town that all got hit with breast cancer at the same time & now its MS so I guess only God knows.I also wonder how many have MS & either don't know it yet (due to mild sx) or have been misdiagnosed.
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559187_tn?1330786456
Now if we were to ask the Mayo Clinic what they think about the numebr of MS cases in the US being at 400,000, they would probably say that too many people are being "misdiagnosed" with MS who don't have MS.

I actually think the 400K diagnosed is low.  If they did a registry of MSers in the US, I'd bet there are closer to 1 Milliion.  I don't think it is a rare diseas either.  I am not sure how the National Organization of Rare Diseases (NORD) identifies a rare disease and its prevalence in population, but I thought it was around 1:2000.  Hmmm....that is an interesting question though and like Ess said, thankfully there are enough of us with MS that the pharma companies see doing research is profitible for them.  

Julie
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Avatar_f_tn
I would also like to know how the 400,000 came around.  

As you guys know from my profile I am from Puerto Rico, right in the Caribbean, which the incidence of MS should be very low, but that is really not the case.  I actually know 15 other people who have it.

The only MS Center that we have in the island along with the school of medicine is conducting a research of the high incidence of MS in portorricans.  So far, their preliminary results show  that for every 100,000 people between 20 and 45 years old, 6 are dxd with MS, kind of a big number for an island whose population is estimated in 3.5 million.

It makes you woonder aqbout the theory that those who live in colder climates have more chances to develop MS than the ones in the tropics.  What do you guys think?

Zulma (Gooddays)
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572651_tn?1333939396
Oops! I should not have used the word RARE in describing this MS - rare diseases are a totally different category, and I am so thankful I don't have one of those because ess is right, the pharma companies aren't intersted in curing just a few people.  There's little money in that.

Zulma, that is very interesting that there is a cluster of MS patients on the island - you sure get more sunlight there in the caribbean than we ever do in Ohio.  The environmental factors kind of get tossed too, considering you don't have heavy polluting manufacturing facilities there either.  If you hear more abou their research, please share, because I would love to know more.

be well,
Lulu
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559187_tn?1330786456
If there is a genetic aspect for MS then I would think the Puerto Rican community would be a good group to study.  The researchers must have that componenet in mind as well.  

Are you participating in this study?  Please let us know if you are in that study and if not, maybe consider it.  When you are in a study, you tend to hear more about what is going on on the inside.  

Julie
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For me, I'm from the Buckeye state and all of these people live there, for the record....

my dad's sister (passed away)
my cousin's father
my dad's cousin
my dad's cousin's father
my grandmother's friend (think I've met her)

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Avatar_f_tn
I am not participating in the group because at the time it started one of the requirements was that you had to be in of the DMD of a period of a year or more, and I was not.

My really good neuro told me that my MS is at a stage that I should not be participating in studies.  I believe in what she tells me because a year ago I was having relapses every three months, with her treatments and going on disability its has gotten better.

I will  try to follow the study though and keep you guys posted.

Take care,

Zulma
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572651_tn?1333939396
I have noticed we have a large number of Buckeyes here on this forum...........  I have to wonder what is in the air, or the soil, or our collective psyche??  LOL

I thought of two more to add to my list

my daughter-in-law's godmother
my son's college roommate's father

all of my MS people are Ohioans - born and raised here - except for the professor in my dept. who came from New York and the grad asst's father who is in Pittsburgh .  

Interesting.......

Lulu
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It is interesting how many Ohioans seem to be touched by MS in some way.  I was born and raised there, but haven't lived there in 10 years.  
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195469_tn?1388326488
I spent my first years of life in Massachusetts.  The next part in Canada, the next part in Japan and by the time we settled down, we lived in Northern Virginia and south the remainder of my life.

I have always wondered if the vaccinations we get as children, affects those predisposed; to the autoimmune system going haywire?
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319532_tn?1250992176
Well i think that 400,000 number represents those that are officially dignosed but lookin at this site and my situation, there may be far more in limbo and in the process of being diagnosed.
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987762_tn?1331031553
Hi There,

On one of our Australian MS community sites they list the number of people dx with MS as being 18,000 for our total population of MSers, still trying to verify and locate the number in my state alone. It doesn't seem very much for our big country, id understand this number if it was for just one state but it says Australia, I will check it out. It does make you wonder if that low incident rate has anything to do with why GP's here might miss early symptoms of MS, they may never actually treat a patient in their entire career if this number is right.

I know of but dont actually know know them:

My mother in laws friend (late 40's, RRMS)
Father of my daughter's primary school friend (suicide mid 30's, PPMS)
Mother of one of my old students (early 40's, RRMS)

I do know of many more but they are basically you guys, & Ozzie internet 'friends' who have a common bond and connect through MS, very few of these Ozzies are limbolanders, though the ones that are seem to be very close to dx because of very obvious later stage MS, or so it seems to me.

Cheers.....JJ
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333672_tn?1273796389
It is a good thing that MS isn't *really* rare and therefore there's not enough money in it for people to research it. However, when I looked into this once, I was surprised, too, that the numbers are as low as they are. For example, apparently 1.4 million people (1 in 85) in the United States have lupus. I've only ever known one person with lupus and I've known or known of several more with MS. On the other hand, with these kinds of invisible diseases, I think it probably is difficult to judge that way. How many people might we know who never say anything and don't look so abnormal that we notice?

On the other hand, the Christopher and Dana Reeve Foundation recently sponsored a large telephone survey on paralysis in the U.S. and found that MS was the third largest cause of paralysis in the U.S. with 939,000, which is way more than 400,000. There's an interesting analysis of how these two things don't jibe at http://voices.washingtonpost.com/checkup/2009/04/a_big_new_survey_of.html. I'm sure I read something that said that this suggested that maybe the MS numbers need to be reevaluated, but according the Washington Post article, the NMSS isn't budging on their number. The Post author suggests that "HR 1362, a bill before the House of Representatives that would establish such a registry for MS and another for Parkinson's disease" might help answer the question as to how many people really have MS.

According to http://www.medscape.com/viewarticle/701822 the survey also looked at the severity of paralysis and got the following percentages:

    * Completely unable to move extremities: 16%
    * A lot of difficulty: 36%
    * Some difficulty: 29%
    * A little difficulty: 17%
    * No difficulty: 2%

"'Not everyone is completely unable to move,' Canose says.  People who reported 'no difficulty' in moving at the time of the survey may have conditions like multiple sclerosis, which can include phases of greater or lesser impairment."

sho

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649926_tn?1297661380
Lulu,

  Sho has a good point there. If I had to guess, I would say that less than 20% of the people that know me know that I have MS. My family doesn't like to talk about it so unless the people are really close friends or family they must wonder why I don't come out to play much, lol.

My list of people with MS:
Mother In Law - in nursing home, can't stand, walk or feed herself

A close friend from high school

A close family friend from church - they say he is "cured", (that doesn't happen)

A co-workers sister

A handful of people that work with my husband which is a factory where my moth-in-law used to work

I think that environment is a huge factor. Someone had a post showing how many more cases per population in certain areas of the US there were and in part it seemed due to cold weather and also where there were large industries.

Oh yea, I was born in NY city, moved to VA when I was 3 or 4 and then back to NY (not the city, rural) on my 16th birthday.

Hugs,
Erin :)
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987762_tn?1331031553
Hi There,

I just went and found the stats for my state and although its only who has registered with the MS society it would probably be pretty close, the grand total is 3,400. I think we would have more GP's than that so my idea that not many doctors would have ever treated an MS patient might be not far off from being right.

I was born in England, Imigrated to Australia when i was 9 and i've always lived in the state of Victoria.

Cheers.....JJ
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648910_tn?1290666683
One female I went to college with.  She lives appx 5 miles east of my home.

My best friend during my twenties.  She lives appx 5 miles south of my home.

A friend I have known since my twenties.  She lives appx 5 miles north of my home.

My GP currently is treating 5 females with MS.  He has told me the rate of MS in this area is high enough that it should be investigated.

Not to mention the countless ppl I don't know but have come in contact with on my search for a dx.

terry
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572651_tn?1333939396
My PCP has 5 MS patients as well, counting me.  That is an unusually high number of MS patients for one doctor to randomly have in her care.

This has been a fascinating conversation - thanks everyone for your contributions.  Now if only we could figure out what it all means.

be well,
Lulu
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634733_tn?1316629592
I have been watching this conversation too. The stats for the UK are 85,000 which is quite a small amount of people. Yet, in the small singing group of 12 people I used to sing with 3 of us have now been dx.

My best friend of 15 years was dx about 20 years ago, my sister was dx 2 years ago and another friend who was a hairdresser was dx when she was in her early 20's.

I am sure I know more too if I think long enough

Good post
Pat
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382218_tn?1341185087
I think earlier this year, someone (me maybe?) posted this map of MS incidence around the globe, but here it is again as it is relevant to this discussion I missed this summer:

http://www. cbc .ca/news/interactives/map-ms/

In developing this map the authors have gone with the high end estimate of MS cases in Canada: 75K (MS Society of Canada says 55K - 75K).  It cites the 400K figure for the U.S.

That 400K has been kicking around a long time.  It is the number I've seen consistently in the various articles and books I've read, regardless of publishing date.  Since we have normal to near normal life spans, this number should continue to increase annually, as the number of new cases each year certainly must exceed the death rate for those with MS.  And of course improvements in diagnostics must result in more cases being identified as MS that previously would have been overlooked or misdiagnosed.



Like others mentioned here, we probably know many more people with MS than we think we do.  It is an invisible disease for many of us.    


Those I know of, either directly or indirectly, are:

- a neighbour
- mother's friends - 2 (one male, one female)
- co-workers - 2 (one male, one female)
- GP - has 2 patients with MS, in addition to me
- childhood friend's mother
- a friend's 2 colleagues
- another friend's colleague
- a friend's roommate
- a colleague's father-in-law
- a colleague's friend
- another colleague's friend
- a friend's boyfriend's sister
- a friend's sister-in-law's sister
- a friend's dental patient
- an acquaintance that my friend met on holiday

OK  I realize a lot of those are a stretch and at least three degrees of separation but as I'm sure many of you experience, when you tell someone you have MS, most will tell you of someone they already know who has it.  Sometimes they are helpful, as in, would you like that person's number/email, they are happy to talk to you.  Sometimes the comments are completely unhelpful, as in, I know so-and-so who has MS and they are in really bad shape/in a wheelchair/dead, etc.  More on this in another thread!!



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1034549_tn?1255428213
What's interesting is that my sister, my first cousin, and myself all have MS and grew up in the same town. There are reports that state MS is not hereditary as well as not caused by our environment.... but it does make you wonder! Also I read that Caucasian Men have less than a 1% chance of being diagnosed with MS(yes I played the lottery the day I was diagnosed  LOL) so it makes the coincidence even more of a "things that make you go HHmmmmmm"
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562511_tn?1285907760
MS is hitting one of my nephews circle of friends in their 30's, one male, 2 females.
A female friend
The wife of my not-so-DH.  She had it bad, it scared him and we got divorced. As it turns out I have it not so bad.  Now he wants me back. (middle finger in the air)
A receptionist at my previous rheumatologist.
My brother's wife cousin

All of these MS folks are California residents.  One of Armenian ancestry.  

I find the increase of male MS notable - particularly African American.  I wonder if the researchers are taking note of this.  It probably has them scratching their heads.  It defies many of the MS theories.
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1086746_tn?1288627989
I was born in Elida Ohio, raised in Ladysmith Wisconsin, Spent 16 years in Goshen Indiana, now have lived 15 years in South Carolina.
I know two people who have MS.
One in Minnesota (Twin Cities) Brother in law
One in Goshen Indian Freind from church.
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1086746_tn?1288627989
PS....
I found this post very interesting!!!
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147426_tn?1317269232
In order to get a handle on who has this disease and real info on what we need there is a nationwide registry called NARCOMS.  This is a registry program run by one of my favorite organizations, the Consortium of MS Clinics.

I consider this a really important way to advocate for ourselves and to get ahuge amount of useful clinical data for our disease.

Please consider enrolling!!!

http://www.mscare.org/cmsc/CMSC-NARCOMS-Enroll-in-the-MS-Registry.html

Quix
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