genetic counselor says......

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genetic counselor says......

Postby Mike56 » Sat Dec 05, 2009 10:14 am

An intersting comment by my UBC MS clinic geneticist " 80% of those with MS have no relatives with MS, 20% have another relative with MS, and it's very rare to have as many relatives as you do with MS!"
I have 2 first cousins, one 1st cousin once removed, four aunts, and two uncles who all have MS. All on my Mom's side. (the aunts & uncles are my Mom's 1/2 sisters and brothers)
I'm still possible MS, but the good folks at UBC seemed real interested in my family tree. As a matter of fact the genetic counselor booked another appointment with me.
Any others here with MS in the family?

Mike
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Postby dlb » Sat Dec 05, 2009 10:43 am

Yes, Mike56,

Mine are all on my father's side. I have 3 first cousins - daughter of my paternal aunt & 2 brothers (sons) of a paternal uncle. One of these brothers that has MS, has a daughter that has MS. A sister of these brothers, has a daughter with MS. Including me (clinically diagnosed in 2005), there are 3 siblings in my Dad's family with MS.
I have not been seen by a genetics counsellor but they did track my family history at my neuro's office.
Interesting stats you were given, because I was told different information & I was given a very informative book by my neuro that lists the stats as I was given to understand. I am still not completely unpacked after a move, so the whereabouts of said book is presently Unknown!! However, when I was diagnosed, I was told of the importance of Vitamin D & that I should recommend to my sibling & children the importance of taking Vitamin D because the odds of immediate family members having MS has been increased over that of the general public. There were some very interesting stats in the book that I can't locate - I must try to find that. If I remember correctly, My neuro said there are something like 5 genes that they know are linked. Somewhere in my research of MS, I read that the genes that are linked are "normal" genes, in that they would not mean that if you have the gene you will have MS. Somewhere along the line, something "switches" the genes. It was described as "good genes gone bad".
Good question & I'm interested in the responses as well....
Deb
Last edited by dlb on Sat Dec 05, 2009 12:07 pm, edited 3 times in total.
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Postby Mike56 » Sat Dec 05, 2009 11:08 am

WOW Deb. We sound like we may be related! Your last name doesn't happen to start with an A or an L does it? I was also told about vit D, and was told there's a 10% chance my daughters may develope MS. My youngest daughter has a 5 month old baby boy, I wonder what his chances are??
The geneticist mentioned getting blood samples from my parents, siblings, and children for research purposes, but I haven't heard any more yet on that.
If you do find that book your Neuro gave you let me know what it's called.

Mike
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Postby dlb » Sat Dec 05, 2009 11:49 am

Hi Mike,
Negatory on the last name - My maiden started with G!

I did some sleuthing online to find the name of the book because I knew I'd recognize the cover!
It is called "Multiple Sclerosis: The facts you need" by Paul O'Connor

I found it in stock on the amazon.ca site. My neuro also recommended:

"Alternative Medication and Multiple Sclerosis" by Allen C. Bowling

She recommended this book because there are many alternative medications that stimulate the immune system & should be avoided with MS.

The whole genetics thing tho' & this new theory.... are we predisposed by genetics to have vein abnormalities. Is that the genetic link? Here is something that I've puzzled over since learning about the CCSVI thing. My youngest son had a congenital heart defect - a coarctation of his aorta. What's that???? Is is a narrowing of his aorta. He was surgically corrected at the age of 6. Tell me there might not be a connection or maybe a genetic something. I can't wait to be tested someday...
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Postby Sprink » Fri Jul 22, 2011 9:32 am

I am SO gald to see that anyone has broached this subject and of course, it seems one thing leads to another, giving me pause to think.

My father would NOT seek further testing, and of course, back in "the day" not near as much was known, nor available to people. So many of my issues and problems, mirrored his over time. Now, I have persued those issues over time, many were dismissed or attributed to Lupus for a long time. Now there is a DNA test for Lupus and I am not positive for that!! Years later, with great vengeance, my life was severely and abruptly halted with the worst symptoms. Finally, after much testing, MRI's and spinal taps...an answer (diagnosis); I have/and have had for many years, MS (boo, but to those who doubted what was going on and were mean about it...hope you rethink what you say about and do to people facing disability). The entire family is fairly convinced, that dad actually had MS as well.

The other interesting thopught I took from this was the post mentioning the son with a coarctation. My dear granddaughter was born and spent days in NICU with that same problem. She went home with follow-up care with a pediatric cardiologist. She passed away the day after her 6 month check-up. It was quick, just as the hospital staff described it could happen from that condition. We had no other "heart links" in the family, nor in my son-in-laws family. You can imagine how devastating that event was and how many questions it has left, especially in regards to future children for them. Truthfully, how many things might be attributed to actual vessel irregularities? Worth a look-see or research of some type.

I am so thankful for this forum.
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Postby coach » Fri Jul 22, 2011 12:42 pm

I have MS and have had it for 27 years, 14 which were asymootomatic. Started after the birth of my first child with a case of optic neuritis. My daughter had a baby at 22 and had a case of optic neuritis also about 6 months postpartum. MS? who knows. She has a daughter. I have 2 brothers and 4 sisters. So far none of them have it.
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