Do any other non-MS people ever have blocked CS veins?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby bluesky63 » Fri Oct 23, 2009 9:26 pm

I agree completely about the children -- I would do just about anything to keep my children from developing MS!

I have been thinking about the info about the "silent" lesions found at autopsy in family members of people diagnosed with MS. That's made me wonder, with regard to CCVSI, whether other family members would also need to be assessed and possibly treated, especially at a young age.
Last edited by bluesky63 on Sat Feb 06, 2010 10:00 am, edited 1 time in total.
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Daughter too

Postby pgy » Fri Oct 23, 2009 11:24 pm

Sorry we have probably high jacked this thread but everyone seems to be talking about their kids so here I go.

My wife was diagnosed about 12 months ago with RRMS. We feel she probably had symptons about 20 years ago with dizziness when she would get the flu.

Anyway before my wife was diagnosed our eldest daughter now 16 when she got the flu was having similar mild issues. It all sounds too familiar. I think I will go see the neuro about this.
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Daughter too

Postby pgy » Fri Oct 23, 2009 11:36 pm

Sorry we have probably high jacked this thread but everyone seems to be talking about their kids so here I go.

My wife was diagnosed about 12 months ago with RRMS. We feel she probably had symptons about 20 years ago with dizziness when she would get the flu.

Anyway before my wife was diagnosed our eldest daughter now 16 when she got the flu was having similar mild issues. It all sounds too familiar. I think I will go see the neuro about this.
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Postby bestadmom » Sat Oct 24, 2009 7:30 am

Dr. Zamboni observed kids from Sardinia for the past 20 years who have stenosis. When he reported in Sept, 90% of them have been diagnosed ith MS, so far. It's just a matter of time.

My hope is that once CCSVI becomes mainstream, that all children of people w/ms will have the oppotunity be tested and treated before symptoms rear their head.
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Postby Wonderfulworld » Sat Oct 24, 2009 12:20 pm

Oh gosh I hope so much that will be the case bestadmom.
I would hope that not one other human being will have to get MS in the future, let alone my son.

I have done as much as I can so far with getting my son (20 months) tested for Vitamin D3 - it was looking good that he was just within sufficient in April but recently, after the summer, he's dropped to insufficient levels. I've put him back on the D3 drops for the winter and will test him again in February.

I feel nearly sick just even thinking he's got a higher risk for MS.
:cry:
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby ErikaSlovakia » Sat Oct 24, 2009 12:25 pm

I have not told anybody this so far.
I do not have children but my sister has got a son. He will be 10 in December.
I am so scared he might have MS. He is OK now but I do not want him to go through the problems. I hope he can go to check his veins in two or three years even in Slovakia. My sister does not know anything, of course.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby bestadmom » Sat Oct 24, 2009 12:35 pm

My girls just had their physicals this past week and we asked the doctor to have their B12 and D3 levels checked. She said she would but felt that because of where we live, their D3 levels would be low nomatter that I have MS or not.

The best thing to come from the appointment was that the doctor's husband is an MS researcher and cares deeply to cure it, whether if thru meds or surgery. The doctor was going to give him all of the web links so he can look into this for himsef.
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Postby bluesky63 » Sat Oct 24, 2009 1:15 pm

This is something that people have talked about -- that maybe our problem is that we metabolize the nutrients differently.

As I am reading all about "endothelial" factors I can see how this could lead to the problems in the blood vessels and why some of the various interventions might work better.

(I apologize if I'm not as articulate as I could be -- just trying to get some ideas out as I keep learning!)

I will be really curious how your daughters' bloodwork comes out and hoping it's all normal!
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Postby MaggieMae » Mon Oct 26, 2009 9:42 am

My daughter also has low Vitamin D and B12 detected by her endocrinologist. I fear for my (adult) children everyday. I always say (pray), my husband and I will deal with what we have been given, but just protect our children and grandchildren.
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Postby dlb » Tue Jan 05, 2010 7:42 pm

I know this is an older post, but my 29 year old son had a coarctation of the aorta. The congenital defect was repaired when he was 6. A coarctation of the aorta is a narrowing or constriction of his aorta. I can tell you.... I had goose bumps after learning of CCSVI and then making this possible connection. Maybe the venous abnormalities are the hereditary link. I worry about my sons & I suspect a few years down the road these tests will be used routinely for preventative measures like pap test or testing for bowel disease based on family history
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Postby islander » Tue Jan 05, 2010 9:08 pm

This is very interesting! It also kind of relates to the question I posted today (about CCSVI, age, and MS onset).

I hope that positive correlations continue to be found in the new research on CCSVI and MS and that MRV and stents (if needed) become commonplace for people who present early symptoms or who have family history.

My husband's mother and uncle have MS (see my Intro) and we would LOVE to be able to go in and find out whether he may someday develop MS -- TREAT IT!!! -- and be done with the "What If"!!!

These kinds of things are why I just love science (I have a BSc and am a science teacher)! Not such a big fan of what some people do with science though...

Cheers!
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