14 Sep 2013 at 5:50PM
I have had m.s. for a long time. Some years ago my middle
daughter was dxd with m.s. Now my youngest daughter is having tests for
what looks very much like m.s. My son-in-law (married to eldest
daughter) has m.s. (dxd 2 years ago.) His sister also has m.s. (dxd 5
years ago.) That's alot of m.s. for one family!
14 Sep 2013 at 5:57PM
Wowsers that is a lot of m.s ... have you been drinking the
same drink ;-) only joking it is a lot though isn't it? I have a lil boy
and I really worry sometimes about him getting it. He said the other
day his leg hurt ... straight away m.s bounced to the forefront of my
mind :-( he's only four but it still worries me. My grandad had m.s too
xxx.
14 Sep 2013 at 8:23PM
Hello Anon,that is a huge statistical blip and how is
everybody? Is there Celtic/Irish/Scottish ancestry? Has a Doctor or
anybody else who regards themselves as clever asked if they can do a
study of you all?
I suppose the only thing of any value is that there is no shortage of empathy and help,
Good luck to all of you,
Wb xx
I suppose the only thing of any value is that there is no shortage of empathy and help,
Good luck to all of you,
Wb xx
14 Sep 2013 at 9:07PM
Is it just an urban myth or does MS pass through the maternal
line?. My Mother had it and my brother has it. I really hope it stops
there!. My Mother was from the North (Yorkshire) and was a smoker so
that didn't help my odds even though I am a Southerner.Also I get the
impression that MS is on the increase. Unscientific I know but our local
MS therapy centre is addind new members all the time. My best to you
all, Peter.
15 Sep 2013 at 12:39PM
Well thats just being lazy you know - there are all other conditions out there you can get!!
We have no history of it in our family at all - on either side. And being Irish I know a lot of my extended family and there is nothing even in second cousins, great aunts etc.
As Wb said at least you don't have the problem of your family not understanding what you are going through but I will still keep my fingers crossed for your youngest daughter that she doesn't have it as well.
Take care and good luck for your family
JellyBellyKelly xx
We have no history of it in our family at all - on either side. And being Irish I know a lot of my extended family and there is nothing even in second cousins, great aunts etc.
As Wb said at least you don't have the problem of your family not understanding what you are going through but I will still keep my fingers crossed for your youngest daughter that she doesn't have it as well.
Take care and good luck for your family
JellyBellyKelly xx
15 Sep 2013 at 12:53PM
Top of the Mornnig JellyBellyKelly,your tribe are lucky that
there isn't MS floating about.My mother is half Oirish and has Lupus
which has been in total remission for eight years.Allegedly the Oirish
gene pool is riddled with Auto-immune conditions.Is there a research
centre in Cork?
Oh, I do know that nobody from the Emerald Isle ever says,"Top of the milk to you"
Wb x
Oh, I do know that nobody from the Emerald Isle ever says,"Top of the milk to you"
Wb x
15 Sep 2013 at 1:41PM
Oh crikey! Your family has certainly had more than it`s fair share of serious illnesses.
This genetic things causes me a helluva lot of worry, as my HSP carries a 50% chance of being passed down to my children and their children.
Innit a pig!
pollx
This genetic things causes me a helluva lot of worry, as my HSP carries a 50% chance of being passed down to my children and their children.
Innit a pig!
pollx
15 Sep 2013 at 2:17PM
thats alot isnt it.
me and my sister have ms but we dont know of anyone else in the family thats had it. does make me think of my children. i worry myself sick sometimes if they will get it or not.
there is a family very close to me. four siblings, all have ms!
me and my sister have ms but we dont know of anyone else in the family thats had it. does make me think of my children. i worry myself sick sometimes if they will get it or not.
there is a family very close to me. four siblings, all have ms!
15 Sep 2013 at 6:14PM
[quote=woblyboy]
Hello Anon,that is a huge statistical blip and how is everybody? Is there Celtic/Irish/Scottish ancestry? Has a Doctor or anybody else who regards themselves as clever asked if they can do a study of you all?
I suppose the only thing of any value is that there is no shortage of empathy and help,
Good luck to all of you,
Wb xx
It's surprising how UNinterested the medics aree in families where there is more than one case of m.s. What are they frightened of finding?
Hello Anon,that is a huge statistical blip and how is everybody? Is there Celtic/Irish/Scottish ancestry? Has a Doctor or anybody else who regards themselves as clever asked if they can do a study of you all?
I suppose the only thing of any value is that there is no shortage of empathy and help,
Good luck to all of you,
Wb xx
It's surprising how UNinterested the medics aree in families where there is more than one case of m.s. What are they frightened of finding?
15 Sep 2013 at 7:16PM
I don't think the medics are "uninterested" at all. There's
been a huge amount of research into this, and dozens of "risky" genes
have already been identified. So it's well-known that genetics play a
big part in your risk of developing it. But it's also known they can't
be the whole story, otherwise identical twins would always both have it,
or neither. In reality, the risk for the other twin, if one has it, is
only about 1 in 3.
So there isn't a particular "MS gene", that can be passed on (in contrast with, say, muscular dystrophy).
But we know lots of genes that are implicated.
When I was diagnosed (interestingly, not before) they took a full case history, including any other instances of MS in the family. We did have another case, but only quite a distant relative (a great aunt). Nevertheless, they wanted to know the exact relationship - which side of the family, and what happened to her (lived to 87, and only confined to a wheelchair in her final months, that anyone knows of), and it all duly went down in the notes. Whether they did anything with it after that, or whether it stayed at the bottom of a locked filing cabinet, I don't know. But I was certainly interrogated about it.
I've also given a blood sample for a genetic study. A bit odd, if they're "not interested", or scared of what it might reveal.
Tina
So there isn't a particular "MS gene", that can be passed on (in contrast with, say, muscular dystrophy).
But we know lots of genes that are implicated.
When I was diagnosed (interestingly, not before) they took a full case history, including any other instances of MS in the family. We did have another case, but only quite a distant relative (a great aunt). Nevertheless, they wanted to know the exact relationship - which side of the family, and what happened to her (lived to 87, and only confined to a wheelchair in her final months, that anyone knows of), and it all duly went down in the notes. Whether they did anything with it after that, or whether it stayed at the bottom of a locked filing cabinet, I don't know. But I was certainly interrogated about it.
I've also given a blood sample for a genetic study. A bit odd, if they're "not interested", or scared of what it might reveal.
Tina
15 Sep 2013 at 8:03PM
I wonder who is/will fund any meaningful study into the
genetic component of MS.I can't see Fat Pharma funding anything which
may reduce their annual sales of £8 billion globally.Gene Therapy if
that's what it is called can't be cheap,so who will pay and what about
the Tax Revenue lost from not pushing drugs.
Wb
Wb
15 Sep 2013 at 10:21PM
Yes, 'risky' genes have been identified in individuals with
m.s. But I challenge you Anitra to identify a research project presently
on the go which is researching familial m.s. involving male and female
affected members of the same family.
15 Sep 2013 at 11:27PM
Well, all I can add is that I have MS and so does my mother.
Maybe the risk of MS is passed down in mitochondrial (mothers side) DNA
but for now I'll be keeping a very close eye on my boys...
15 Sep 2013 at 11:56PM
Why should I waste my time and energy having to sift through
research papers to refute the allegations of an anonymous coward? You
are the person posting anonymously (at least, I assume it's the same
"anonymous" twice), with nothing to substantiate your rather sweeping
generalisations. You obviously lack the courage of your convictions,
otherwise why wouldn't you be willing to put a name to them?
Note, I do say "a" name - i.e. it needn't be your real one, any more than mine is Anitra. But just something to know you by here, and reduce the confusion of whether "Anons" are several posters, or all the same.
What would be the value of the research you propose? We already know it's not inherited. We don't need further experiments to prove that. We also know blood relatives have more shared genes than random strangers. We don't need new experiments to prove that, either. So if we know there are a few dozen "risky" genes, and that members of the same family have more shared genes than mutual strangers, we can see why the risk is higher for blood relatives.
There are already statistics (which I'm not going to start Googling for now - feel free to do so) which quantify the increased risk, according to proximity of the relationship - and yes, even down to male v. female. From memory (which I do not guarantee to be reliable - I have MS, after all) the risks for male relatives were slightly lower than for female, which reassured me at the time, as I have nephews but no nieces. But that's not to say it ONLY traverses the female line. Our one existing known case in the family was on my father's side. Nobody on my mother's side is known or even rumoured to have had it. Not even a mystery illness or two that might have been undiagnosed MS. So I'm pretty sure my "marked card" came to me through my father - though he didn't have MS himself, and neither did his parents. I think he passed me the potential, though.
Who knows what then happened to make the risk materialise, and not just lie dormant, as it must have done for most of the family. Then again, I don't have a very large extended family, as both parents were only children. Had I lots of aunts, uncles and cousins, we might have seen more cases than just mine.
Tina
Note, I do say "a" name - i.e. it needn't be your real one, any more than mine is Anitra. But just something to know you by here, and reduce the confusion of whether "Anons" are several posters, or all the same.
What would be the value of the research you propose? We already know it's not inherited. We don't need further experiments to prove that. We also know blood relatives have more shared genes than random strangers. We don't need new experiments to prove that, either. So if we know there are a few dozen "risky" genes, and that members of the same family have more shared genes than mutual strangers, we can see why the risk is higher for blood relatives.
There are already statistics (which I'm not going to start Googling for now - feel free to do so) which quantify the increased risk, according to proximity of the relationship - and yes, even down to male v. female. From memory (which I do not guarantee to be reliable - I have MS, after all) the risks for male relatives were slightly lower than for female, which reassured me at the time, as I have nephews but no nieces. But that's not to say it ONLY traverses the female line. Our one existing known case in the family was on my father's side. Nobody on my mother's side is known or even rumoured to have had it. Not even a mystery illness or two that might have been undiagnosed MS. So I'm pretty sure my "marked card" came to me through my father - though he didn't have MS himself, and neither did his parents. I think he passed me the potential, though.
Who knows what then happened to make the risk materialise, and not just lie dormant, as it must have done for most of the family. Then again, I don't have a very large extended family, as both parents were only children. Had I lots of aunts, uncles and cousins, we might have seen more cases than just mine.
Tina
16 Sep 2013 at 10:15AM
'anonymous coward' - strong words Anitra! I say the medics
are 'uninterested' because no one as far as I can make out is
researching familial m.s. where the male is involved. When
the third member of my family was dx'd with m.s. I wrote to a Cambridge
researcher who was researching families with m.s. His reply was that he
was only interested in families where m.s. had possibly been passed
mother to daughter. If I was asked to do a research project on the
cause of m.s. I would focus on families where more than one member has
m.s. -- do they all have the same risky genes - what is the difference
between those family members who have m.s. and those who don't. I
questioned why this line of research seems not to have been followed and
the response from the MSS was that they don't lead research projects
but rather they consider applications from researchers and then decide
whether or not to financially support them. And so I stick with my
initial premiss which is that the medics, at the present time, are not
interested in researching familial m.s. If indeed m.s. was caused by
a 'rogue' gene the implications for the pharmaceutical industry and
indeed the scientists involved in m.s. research are profound. And
finally you say 'We know it's not inherited' - any empirical evidence to
back this statement up? My two daughters and I would be interested to
see the evidence.
16 Sep 2013 at 11:06AM
Well I know for sure mine wasn't inherited. I'm one of five
children and my mum was one of seven children. I have 13 first cousins
and umpteen second cousins. There is no history of MS as far back as my
great grandparents. Heart disease and diabetes do seem to be inherited
but the heart disease is passed on through the male line so I am safe
there. My father has a mild case of Parkinsons which is of course
neurological but that's the closest thing to MS we have in the family
and, again, it's an isolated case.
Tracey x
Tracey x
16 Sep 2013 at 2:37PM
[quote=elmo]
Well I know for sure mine wasn't inherited. I'm one of five children and my mum was one of seven children. I have 13 first cousins and umpteen second cousins. There is no history of MS as far back as my great grandparents. Heart disease and diabetes do seem to be inherited but the heart disease is passed on through the male line so I am safe there. My father has a mild case of Parkinsons which is of course neurological but that's the closest thing to MS we have in the family and, again, it's an isolated case.
Tracey x
Thanks Tracey -- having done my family tree there doesn't seem to be anyone who had m.s. But the fact remains that two of my children have it - is this coincidence or has some 'rogue' gene popped up. Could it be that both my wife and I are 'carriers' of some genes which in combination cause m.s. (cf Cystic Fibrosis) What concerns me is that there seems very little going on on the research field re the possibility of m.s. being inherited. (With apologies for the 'Anon' - I'm not English and my user name reflects this and so I may be easily identifiable by my family. The whole question of inherited m.s. being an extremely difficult issue at present.)
Well I know for sure mine wasn't inherited. I'm one of five children and my mum was one of seven children. I have 13 first cousins and umpteen second cousins. There is no history of MS as far back as my great grandparents. Heart disease and diabetes do seem to be inherited but the heart disease is passed on through the male line so I am safe there. My father has a mild case of Parkinsons which is of course neurological but that's the closest thing to MS we have in the family and, again, it's an isolated case.
Tracey x
Thanks Tracey -- having done my family tree there doesn't seem to be anyone who had m.s. But the fact remains that two of my children have it - is this coincidence or has some 'rogue' gene popped up. Could it be that both my wife and I are 'carriers' of some genes which in combination cause m.s. (cf Cystic Fibrosis) What concerns me is that there seems very little going on on the research field re the possibility of m.s. being inherited. (With apologies for the 'Anon' - I'm not English and my user name reflects this and so I may be easily identifiable by my family. The whole question of inherited m.s. being an extremely difficult issue at present.)
16 Sep 2013 at 9:42PM
Thanks Tracey -- having done my
family tree there doesn't seem to be anyone who had m.s. But the fact
remains that two of my children have it - is this coincidence or has
some 'rogue' gene popped up. Could it be that both my wife and I are
'carriers' of some genes which in combination cause m.s. (cf Cystic
Fibrosis) What concerns me is that there seems very little going on on
the research field re the possibility of m.s. being inherited. (With
apologies for the 'Anon' - I'm not English and my user name reflects
this and so I may be easily identifiable by my family. The whole
question of inherited m.s. being an extremely difficult issue at
present.)
It must be a very worrying time for you. Do you have grandchildren
too? If so you must all be watching them like hawks. Fingers crossed
for your youngest daughter.
Tracey x
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