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Genteics, again.....

Posted: Thu Jul 24, 2008 1:54 am
by watergypsy
Have received quite devastating news – my 1st husband has just been diagnosed with PPMS which I have had for four years. We married in 1974, had two children (’79 & 80) then stupidly split up around 1984. We are still friends and he is looking to me for advice but I just don’t know how to help him - he is in England and I'm in a w'chair living alone in Spain - I can't even give him a hug..

Even more difficult than this, is knowing what to tell our children – our daughter has two youngsters but thank heavens the boy does not. I’ve read that the chance of getting MS if you have a close relative affected goes from the normal one in a thousand to one in fifty.

Does this mean that our two now have as much as a one in twenty five chance of getting it or is the risk compounded now that both bloodlines are affected? And what will happen to the g.children? Can anyone advise me where to find out?

thank you if you can help

Posted: Thu Jul 24, 2008 6:24 am
by gwa
This is quite horrible news for you and it must be hard for you at this time.

The next time that you see your doctor, ask him what he thinks about the chances of your children getting this disease. I don't know the answer to your question, but their chances may be less than what you are thinking.

It is too bad that you and your ex now have to contend with the issue of perhaps having the children suffer with MS too. I hope you get some answers soon.

gwa

Posted: Thu Jul 24, 2008 6:54 am
by HUTTO
im sorry for this happening to your family...im in that situation..mom was dx right after i was born..dad was dx 18yrs later...i was dx almost 3yrs ago..

that being said..you still don't know if one will get it. honestly what i would do is i would have them look into diet and supplementation as if they did have it. the swand diet and best bet diet..

there chances do increase. there i no way of knowing if the get this shit or not..i would treat it as if they do and take the natural approach first. sorry..i hope it works out for you and your family.

Posted: Thu Jul 24, 2008 7:12 am
by TwistedHelix
Hello watergypsy,
What a terrible situation you find yourself in… my heart goes out to you at this worrying and anxious time.

I don't know if it's what you're looking for, but there's quite a lot of information about genetics and MS on this page:

short url

And there's lots more to look at by following the links at the side of the page.
I think it would be helpful if you could get yourself referred to a geneticist, who might be able to make things clear for you – you're in a complex situation that is probably outside the remit of a family doctor – but don't be surprised if they ask to test and monitor your whole family over time because I am sure they will see your dreadful situation as an opportunity to gain valuable, and possibly unique, information.

I hope that talking to an expert will ease your fears a bit,

Posted: Thu Jul 24, 2008 11:05 am
by watergypsy
Thank you gwa, Hutto and TH – not quite what I wanted to hear but thank you for caring enough to reply. However, what you have done, is to give me the shove I needed to do something – anything, rather than sitting in stunned silence wishing I could turn the clock back.

I have discovered a research Neuro who is working on “risk genes” in the Department of Clinical Neurology at Oxford University. Same place as the research you found Dom.

It seems there is a pair of genes known as DR2a and DR2b which may be of particular interest. I’ve made contact with the researcher who has got my notes from the UK hospital and is going to ring me tomorrow. I hope she has some suggestions.

http://news.bbc.co.uk/1/hi/health/5379250.stm has a brief description which may be of interest - to Hutto in particular.

Thank you again guys, it’s good to know you are there.

Posted: Thu Jul 24, 2008 11:11 am
by gwa
I thought the gene discovery was great until the part where it states the researchers used mice to discover the gene. We all know that mice fake MS is nothing like human MS, so this research may not help us at all.

Again, how nice to be a mouse.

Your contact at Oxford sounds like a good person to become acquainted with now. She may have a lot of answers for you. I hope she is able to help put some of your fears to rest.

gwa

Posted: Thu Jul 24, 2008 8:21 pm
by rainer
TwistedHelix wrote: And there's lots more to look at by following the links at the side of the page.
I think it would be helpful if you could get yourself referred to a geneticist, who might be able to make things clear for you – you're in a complex situation that is probably outside the remit of a family doctor – but don't be surprised if they ask to test and monitor your whole family over time because I am sure they will see your dreadful situation as an opportunity to gain valuable, and possibly unique, information.
I agree, the lack of genetics shared b/n you and your ex suggests the possibility of environmental factors.

There has been a stir of news recently about Vitamin D preventing MS, so you may want to recommend that to your family.

Sorry for the awful news.