MS carrier testing.

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BobS
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MS carrier testing.

Post by BobS »

Hello, this is my first time posting here. I am looking for some advice/opinions. My son is engaged to be married to a woman whose brother died of MS a few years ago. They both are wanting to have her tested to see if she is a carrier of MS so that they can make a decision about having children. As far as I know her bother has been the only incidence of MS in her family. It seems the test is rather expensive ($1500) and not covered by any insurance. My concernes are: Should they be concerned enough to go to some lenths to have this test done before starting a family? If they need to have the test done does anyone know of any organization that could help with the cost or know of an organization that does the testing cheaper? From what I understand the National MS Society has told them they do not subsidize testing in any way. So far I have not been able to find anything on line that would shed any light on this. Thanks in advance for any and all advise.
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daverestonvirginia
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Re: MS carrier testing.

Post by daverestonvirginia »

Wow, where to start. I have never heard of a test to find out if you are a carrier of MS. How can there be a test since it is not known what causes MS. I have no idea what this 1500 dollar test would tell you? Even if there was a test why would anyone want to take it? MS does not follow any real defined paths. You can get it when you are young or old it can be sever or mild. In my case I was DX at 45 and have a very mild symptoms does that mean I should not have been born? And there is also the possibility we will find out what causes MS and have a cure sometime in the near future, we can hope.
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cheerleader
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Re: MS carrier testing.

Post by cheerleader »

"There is no one gene associated w/MS. There is no genetic test for MS."
Please read this for more info:
http://www.mssociety.org.uk/sites/defau ... Feb-13.pdf

The only gene locus HLA-DRB1*15:01 more common with MS is found in only 4% of people with MS.
If one identical twin has MS, there's only a 25% chance the other twin will have it! That's twins!
Because the study examined the genome so comprehensively, "it is an incredibly important negative", says David Hafler, a neurologist at Yale University in New Haven, Connecticut. The results indicate that there is no clear genetic reason to explain why one twin developed MS while the other did not.
http://www.nature.com/news/2010/100428/ ... 1259a.html
Because of this, there is no test or genetic profile for MS. There is nothing to "carry."
But there are always people willing to make a buck off of fear.

My husband has MS, and our 20 yr. old son is perfectly healthy. But he takes care of the environmental factors we know about. MS is associated with lots of environmental factors: like smoking, vitamin D levels, latitude, EBV, inactivity and obesity. My husband and son get UV rays, vitamin D, exercise, they don't smoke, they eat well and live their very active and productive lives. I can't imagine not being married to my brilliant husband (who is still jogging at 51), and never having my wonderful son.

Life is unpredictable. Living in fear of the unknown doesn't change it. Please share this with your son, Bob.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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daverestonvirginia
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Re: MS carrier testing.

Post by daverestonvirginia »

Cheer, as usually you have said it much better than I can. Dave
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cheerleader
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Re: MS carrier testing.

Post by cheerleader »

daverestonvirginia wrote:Cheer, as usually you have said it much better than I can. Dave
Thanks... but what you said was really important Dave--
People with MS matter. Glad you and Jeff and everyone on this board was born.
xo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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