the 'Random CCSVI Notions' thread

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

Postby HappyPoet » Sat Oct 31, 2009 5:01 pm

Cah, I love lists and outlines; they help with my memory troubles.

Inflammation can join the list.

~HP
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Postby cah » Sun Nov 01, 2009 12:51 pm

Happypoet

I don't understand what you mean.
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Postby HappyPoet » Mon Nov 02, 2009 3:05 pm

Cah, you wrote:

As far as I have understood, there are (or might be) three effects from the stenosis:
- insufficient blood flow
- iron accumulation
- blood parts that cross the blood-brain-barrier


I think inflammation, mediated by the immune system, is another effect of stenosis; inflammation is a problem in RRMS which steroids and some DMD's target.

~HP
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Postby zap » Tue Nov 03, 2009 9:05 am

Something I wanted the throw out there and see if it rings any bells -

Almost every night when I first lie down, my eyes water briefly and profusely - it looks like I am crying for a few seconds. Could increase in pressure in my head do this or is it unrelated, I don't know ...

And then when I wake up in the morning, shortly after returning to the upright position my nose gets all sensitive and sniffly for a brief period of time, liek allergies kind of but seemingly just over-reactivity ...
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Postby LR1234 » Tue Nov 03, 2009 9:40 am

I get tremors in the morning which I do not experience in the day or at any other time, once I get up they stop. I wonder as well if that is because of the jugulars not being able to take the strain of the blood flow at night. I do have a raised bed as well.
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Hair Loss & Stuffy Nose

Postby Ruthless67 » Tue Nov 03, 2009 10:02 am

Hi All,
My hair has been thinning too the last 10 years or so. I used to wear it shoulder length or longer but it's gotten so thin that I've started to have the hair dresser cut it shorter, first into a bob below my ears and now to the middle of my ears. My husband prefers my hair longer too and asked if the hair dresser could make it longer. I told him sure, if you're willing to pay for extensions!! :lol:
Also, every morning I wake up with a stuffy nose and I usually sneeze one or two times and have to blow my nose one or twice as well.
Another familial and interesting trait was that my mother later in life had to have a kleenex everytime she ate because her nose literally ran while she ate. Then later that same thing happened to my older sister in her 50's; and now I sometimes do the same. But thankgoodness not as much as my mom's.
Later,
Lora
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Postby Sawdoggie » Tue Nov 03, 2009 10:24 am

It would be interesting if sinus issues were related to CCSVI. I have sinus issues pretty much my entire life, though I don't have any allergies to speak of and it is pretty much year round. I get a lot of what I would call sinus headaches as well. Another interesting thing in this thread that caught my eye was symptoms appearing in the morning. During my last relapse, everything was definitely worse first thing in the morning. As the day went on, some of the numbness would subside a little. I also sweat a lot a night even though the house is cool and I don't pile on blankets. During any real physical exertion, my face and ears (especially) get really red and hot to the touch, more so than most people. Maybe this is all related?
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Postby Crabby » Tue Nov 03, 2009 10:47 am

LR1234 wrote:I get tremors in the morning which I do not experience in the day or at any other time, once I get up they stop. I wonder as well if that is because of the jugulars not being able to take the strain of the blood flow at night. I do have a raised bed as well.


Did you experience the morning tremors before raising your bed or are they a new symptom that you started experiencing after raising your bed?

I raised my bed about half a year ago and I've been getting progressively worse since then. Of course I was also getting progressively worse before I raised my bed.
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Postby LR1234 » Tue Nov 03, 2009 12:18 pm

I had the tremors before raising the bed, after a bad relapse.
Along with the tremors came major numbness in arms and fingers at night. I think the B3 and B1 mega doses has helped with the numbness at night as I don't get that anymore and the tremors are down to mornings only.
I would be interested to see if anyone else has tried high doses of B3. (I take 300mg 3 times a day for blood circulation)
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Postby homefront » Thu Nov 05, 2009 5:59 am

Hi

this part of the site is getting so large I can't keep up with it all so excuse me if this has been raised before.

In a lot of things I've read about environmental factors in ms and vitamin d there seems a big connection to amount of sunshine you get where you live and the percentage of population with ms (Scotland, where my wife grew up being a case in point).

Does anyone know if a possible link with this and ccsvi is being looked at?

Again, apologies if this is covered elsewhere.

Homefront

wife diagnosed ppms 2007
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Postby acol » Thu Nov 05, 2009 8:15 am

Hi everyone.

I agree with Homefront - this site is so huge that it must be easy to repeat things which have been covered elsewhere. I have a query regarding the headaches which I have been getting ever since I was first diagnosed with MS some 16 years ago. These headaches differ from the normal headaches which everyone gets from time to time. When I get one of my MS headaches it last for 2 - 3 days. Taking paracetamol based medication has little or no affect. The only relieving treatment is to take soluable aspirin. Typically, I would take the maximum permitted dose every 4 hours. This would control the pain and eventually it would go away - until the next time!

It occurred to me that the aspirin might be thinning the blood and this could alleviate any obstruction in the juggular/azygous vein. Does anyone have any view on this theory? Incidentally, is it azygous or azygos?
Nigel
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Postby cheerleader » Thu Nov 05, 2009 9:09 am

homefront wrote:In a lot of things I've read about environmental factors in ms and vitamin d there seems a big connection to amount of sunshine you get where you live and the percentage of population with ms (Scotland, where my wife grew up being a case in point).
Does anyone know if a possible link with this and ccsvi is being looked at?


Yes. In Bologna, Dr. Zamboni mentioned that environmental factors like low vitamin D, Cpn, Lyme, EBV (chronic bacterial or viral infections), lack of adequate nutrition and smoking are being studied as endothelial disrupters. This means they change the lining of the blood vessels and further increase stenosis and reflux. Jacobs and Bologna are studying these factors in CCSVI. I wrote about the connection to these factors and autoimmune disease in Jeff's endothelial health program in October last year:
http://www.facebook.com/note.php?note_id=123456602210
It occurred to me that the aspirin might be thinning the blood and this could alleviate any obstruction in the juggular/azygous vein. Does anyone have any view on this theory? Incidentally, is it azygous or azygos?


Europeans tend to write azygous, Americans use azygos. Either are correct. It's always jugular. Yes, aspirin would be thinning the blood, and it might be enough in your case, acol, to relieve some of the reflux causing pressure and pain...but aspirin is not enough to completely bypass stenosis, or else it would cure MS, as it is the recommended "cure" for Hughes Syndrome (antiphospholipid antibodies, a differential for MS)

Hope this helps a bit, guys!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby acol » Thu Nov 05, 2009 10:29 am

cheerleader

It does help, thank you. It always amazes me how helpful people are in answering the fairly basic questions of people who are relatively new to this wonderful site.
Nigel
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Postby homefront » Fri Nov 06, 2009 1:34 am

Thank You Cheer

I echo what ACOL says.

I will make time to read further on this.

Best Wishes
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Fibro and CCSVI

Postby Gman » Fri Sep 03, 2010 11:32 am

I have all the classic symptoms of CCSVI and suffer from Fibromyalgia. My mother has MS.

I was recently tested for CCSVI and tested positive for 3 out of 5 parameters. So, I have it.

Who knows how many "neurological conditions" are to blame for this irregularity?

Now, I'm on the road to find the best liberation procedure out there. I will keep everyone posted.
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