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Ms member's i wanted to get your feedback is ms hereditary or bad luck

Evening to all ms members and guest’s

I have two kiddies and i wanted to know is ms hereditary or bad luck. I have read another thread were a child had epilepsy and there was a higher chance of ms occuring. My reason for asking is i have epilepsy then developed ms and two of my aunties have the same diagnosis epilepsy first then ms came next. I have often wondered why there as been no trials to see if there is a link. I am terrified my daughter will develop ms as she already at the age of nine suffer’s with cramp and fatigue. Also do any of you have strange allergies after you got ms i have a reaction to cannulas ( needles ) my arm swell’s and goes blue and then i pass out. I am looking forward to your replys to see what you think and have

Hazexx

Hi Hazel,

My mother had MS, and one of her aunts was in a wheelchair, but they didn’t know what was wrong with her. I don’t have any new allergies, but I have noticed that my hayfever is steadily getting worse every year - however, this may not be related to the MS.

Luisa x

http://www.mssociety.org.uk/what-is-ms/information-about-ms/causes

Haze, I don’t know whether this link will work, but it is to a little section in the main part of the site and it says that there is only a very small family history link in MS. Most of us, me included, have no one in the family who has had MS. There’s a longer fact sheet on MS and genes on the main part of the site too, with more detailed information.

Alison

x

Way back when I was doing my psychology degree, we were taught that a lot of mental health problems had three components:

Genetic, Environmental, Situational.

In short that to get (say) Clinical Depression, you needed a genetic disposition to depression, to be in a depressive environment, and to be in the wrong situation.

I have always wondered if something similar applied to MS - you could have the genetic disposition, but not get the environmental or situational triggers, and so never get the disease.

None of my immediate ancestors had MS, but I have buried both my Father and my Son from Cancer - in the context of MS, that does not seem to to be much of a problem (but I suppose I ought to worry).

Geoff

Hello Hazel,

Nobody in my family to my knowledge has has MS. Myself I have Ankylosing Spondylitis, Lupus and RRMS which are all auto- immune deseases. When I was first tested for MS they also tested for epilepsy, it was a question of which it was, turned out to be MS. But having said that no one else in my family have any of these problems. My advice is stop worrying, just to add to it I also have osteoporosis which is not an autoimmune desease. You could always ask advice from your MS Nurse or neuro’ to put your mind at rest.

Janet x

There is a large amount of research showing that there is a genetic component to MS, but that it is definitely NOT the only factor. The phrase that scientists use is “necessary, but not sufficient.” An example of this is that it is necessary to be female to get pregnant, but it is not sufficient (a few other things are involved in getting pregnant than just being female!). So, to get MS, you probably need to have the dodgy genes, but that in itself is not enough to get MS.

The latest thinking is that to get MS depends on genetics, low exposure to vitamin D3, contracting a virus as a child/teenager (probably the Epstein Barr virus which can cause things like glandular fever, but also milder, 24 hour “bugs”) and perhaps other factors too.

They have identified more than 50 genes involved in MS so it is really complicated.

There is no direct link between epilepsy and MS. The number of people with MS who have epilepsy is higher than in the non-MS population (I think about 6% of MSers have epilepsy and about 1% of the non-MS population has it), but having epilepsy in no way means that you will get MS.

So, to get to the point. Because you have MS, you probably have the genes that make getting MS more likely. This means that your children may have them too, but these are only a small part of the story so while your children have a higher than average chance of getting MS, it is still MUCH MUCH more likely that they won’t.

It probably wouldn’t hurt to get them onto vitamin D3 supplements though - it’s an easy thing to do, and it might just make a difference. (Try telling that to my teenage children though :frowning: )

Btw, I have one second cousin and one more remote relative with MS but nothing closer than that. Seems to me that bad luck is the biggest factor!

Karen x

Hi Hazel

Other than myself there’s no one else in my family who has ms. My father has rheumatoid arthritis (and psoriasis) his sister had ankylosing spondilitis, two other uncles on my fathers side have severe arthritis of one form or another and my mother - amongst other things - has diabetes. All of these are auto immune conditions and going by recent studies are thought to be linked in some way or another by a common denominator.

About a year after being dx with ms I developed a skin condition - a dermatologist looked at it (but ran no tests) and decided it was a nickel allergy. Tests run by my GP and ms nurse / neuro over several months haven’t backed up the nickel allergy theory though. My GP has now started treating me for ezcema/psoriasis (which becomes infected) and the treatment is helping. Apart from when I was a toddler I’ve never had any skin complaints before so maybe it’s just a coincidence. On the other hand I know that some of the meds that I’m on can have an effect on the skin so it’s possible they’re responsible. What I do know is that over the last say 5 years or so I’ve had a lot of infections of varying forms. Whether it’s all related in some way or another remains to be seen.

Debbie xx

Hi Hazel

I come from a long famiy history of MSers (it goes back generations to when it used to be classed as sleeping paralysis) and this line more recently is unfortunately continuing (my niece is in limboland and my youngest daugther is unfortunately demonstrating distinct signs too). We have yet another Drs appointment tomorrow to try to address some of her symptoms.

On a more positive note I (like most of my family of MSers) have lead a very fulfilling and active life, even with MS. It wasn’t until 4 years ago when my mobility finally gave out (I’m a wheelchair user now) that having MS become more difficult, its not that it wasn’t difficult before this - it was, but I could still manage and managing now is so much more difficult.

MS is different for all of us (even within families) my sister had a more difficult time and died at 60, my aunty also had more difficulties and died in her late 50’s, whereas my mother although suffering with it she was well into her 60’s before it started to confine her and she lived to 93. MS is incurable but affects us all differently from mild to severe and so even if it is diagnosed it might be mild for a very long time.

Also the younger generation have more access to DMDs so there is more hope of slowing the progression down from them.

There is hope and you need to hang on to the hope that a cure might be found and live everyday as it comes.

Like many of us I hate MS, but it is part of our lives and we have to make the best of what we have to live with, and not let it define us. I and my family are so much more than MSers,

Love, Mary xxx

What a very humbling post Mary. I love, and completely agree with, your last lines: we should never let MS define us; we are so much more than MSers.

I hope that your daughter’s symptoms turn out to be something fixable, but if it is MS, that she follows in your mother’s footsteps.

Karen x

Hi, I am the only one in my family but I don’t come from a big family! Cheryl:)

Thank’s to all

i have read them all and the one thing i keep picking up on his female and either your immune system is already diseased. Im really interested by this and i spoke to my freind’s at the local ms group and there really intrigued and said they never saw a possible trigger till you sit down and look into your familys history and illness. Both my aunties have arthritis and one as lupus the other as diabetes and both have epilepsy. Here what i concluded in my family that could answer my risk

epilepsy ,lupus, spondolotis ( bad spelling ) , diabetes , stroke and cancer of breast and heart disease and all of us yes all have and still have ezcma even me and my kiddies

Almost all of my family have one of the above if not all and ms is now occuring in the female side. My auntie confirmed ages ago that my cousin was under investigation for ms also. So if your family have anything like auto immune disease or nervous and female should they be able tofind the gene that is faulty i would glady be tested and my family agree. What do you think

My mums cousin has it but that’s pretty distant.

I remember not long after my mum was diagnosed, her parents took part in research to find out if it was hereditary, but I don’t really know anything more than that, and can’t ask - my mum died, my granny is currently in the early stages of dementia, and my grandad has enough to deal with just now.

It is interesting though, and from the replies, it would seem that it’s unusual for direct relatives to develop it.

L x

Isla sorry to hear your mum passed and your gran is the early stages of dementia. My mother in law has vascular dementia and my father in law hid for year’s we never knew til he passed away. It is a cruel disease my mum in law no longer speak’s or know’s who we are hope all is well

Hazelxxx

Hi, Hazel,

DON’T KNOW - DON’T CARE! (I THINK THAT I WAS TOLD THAT IT’S NOT IN THE FAMILY) BUT THEY DID COME FROM ORKNEY AND SHETLAND (AND I BELIEVE THAT IT’S QUITE ‘COMMON’ THERE! ) I’VE HAD MS FOR AROUND 13 YEARS AND I HATE IT! I WENT TO A FEE-PAYING SCHOOL IN DUNDEE & UNIVERSITY IN ABERDEEN - I ‘USED’ TO PLAY RUGBY, I GOT BLACK-TAGS (ONE OFF A BLACK BELT IN A MARTIAL ART) AND I ‘USED’ TO DO ‘LONG-DISTANCE’ RUNNING. I HAVE’N’T HAD SEX FOR MONTHS BECAUSE OF A ‘BLOODY’ CATHETER BEFORE I WAS LUCKY ENOUGH TO HAVE HAD SEX WITH OVER 50 FEMALES - I’M NOW MARRIED TO A ‘STAUNCH’ CATHOLIC FOM NORTHERN IRELAND (WHO GOES TO ‘CHURCH’ EVERY SUNDAY - I WAS BROUGHT UP ‘PROTESTANT’ (BUT I DON’T GO TO CHURCH). ALL I KNOW IS THAT I AM ALMOST 56 AND I’M 'DESPARATE FOR A CURE! (WHICH I KEEP READING THAT THEY ARE GOING TO FIND?).

NO, I HATE MS.

MARCUS.

(I HAVE A DAUGHTER WHO IS ‘ALMOST’ 9 AND I LOVE HER TO BITS BUT I HOPE THAT SHE IS SPARED ‘MS’)

SORRY TO BOTHER YOU AGAIN, HAZEL. I FORGOT TO ‘ADD’ THAT MY WIFE IS AN OPTHAMOLOGIST (STUDIED AT UNIVERSITY IN LONDON) AND APART FROM BEING ‘IN PRACTISE’ - SHE DOES P/T WORK AT THE EYE PAVILION IN EDINBURGH. I DON’T WORK - I CAN HARDLY WALK BECAUSE OF MS.

i DON’T KNOW WHERE IT COMES FROM AND I DON’T CARE - JUST FIND A CURE!

MARCUS. (OH, AND TO ADD ‘INSULT TO INJURY’ (AS IS ‘SAID’) MY BLOODY INITIALS ARE M.S.)

UNLUCKY OR WHAT?

MARCUS.

It’s difficult to say Hazel, personally have no one that I know of with MS in my family, I, like you are frightened for offspring and did become a bit paranoid about it all. A very wise MS nurse put me straight and told me there is no point in worrying or worrying your family when it may never happen and can lead to depression.

Although I must say everytime my daughter has cramp or is tired from work I do worry but then everyone gets cramp now and again and my daughter does lead a very busy life. Just hope and pray that there is a cure but other than that; I have told my daughter to get as much sun as she can (without burning) and to take some vitamin D drops in the winter, this is to prevent her from getting lots of diseases not just MS.

Take care

Love Wendy

x

Hi Hazel,

There has already been a lot of research on which genes are associated with MS, and the evidence is clear that it’s not ONE gene, like some illnesses, but many genes - probably more than 50! So it’s not “simple” inheritance - like what colour eyes you have.

Obviously, which genes you have already milling around in the family influence which set you end up with. But even people with a high number of the “suspect” genes for MS do not necessarily go on to develop it. It must be some combination of an “unlucky” set of genes, that allows the possibility of MS, but also some environmental trigger that determines whether the person actually goes on to develop it or not.

MS is known to disproportionately affect women, by a ratio of about two to one. Look how many women are on these forums! (It’s not just that blokes don’t like talking :wink: )

It’s also known to be statistically associated with certain other diseases in the same family, for example: Crohn’s disease, Type1 diabetes, Hodgkin’s lymphoma, and Rheumatoid Arthritis (but not, I don’t think, eczema, or cancer generally - other than Hodgkin’s).

This suggests these diseases have genetic factors in common, and may in some sense have “related” causes.

So as you can see, it’s very complicated, and not just a matter of inheriting (or not) one gene.

On average, about one in five MSers do have another known case in the family - which is much higher than chance alone would dictate.

I’m in the one in five, but the “other” case was not a close relative, and I’d never even heard she had it until after I was diagnosed. She was one of my father’s aunts; my grandma’s sister. My dad himself didn’t have MS, and neither did his mother. My mum doesn’t either, but one of her cousins had Crohn’s disease - and died of it. So possibly some risk factors from that side too.

Tina

Hi Gayle,

I’m sorry your family has been visited so many times, and particularly that your brother died from problems relating to his MS.

Is it “bad luck” or genetics?

In a way, I’d say both. Because genetics IS just a kind of luck. We don’t know what we’re getting, and we’ve certainly got no say over it.

It’s certainly unlikely that three cases of MS in the same family are complete coincidence, so the obvious explanation is there’s something in the genetics of the family that makes individuals more susceptible. But that is NOT the same as saying it’s inherited.

MS demonstrates “familial aggregation” - which means there are more families with multiple cases than should happen if it were purely random. But still, four out of five MSers don’t have ANY affected relatives, so there has to be more to it than just genes.

Even among identical twins (exactly the same genes) if one gets MS, there’s only about a one in three chance the other one will.

Blood relatives of an affected person do have a higher risk than the general population, but statistically, the odds are still in favour of them NOT getting MS.

Tina

Hi Hazel,

As far as I know I am the only bod with MS in our family, that extends to Holland & Canada. I had always assumed that it was just the luck of the draw.

Yours,

Moira