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Hi all,

Since CCSVI is a blood flow problem, I wonder whether stuff like the position of our body (supine or upright), posture or doing strong physical effort affects the severity of it. Could the impacts of venous reflux be affected in some way by these factors?

Best,

Pedro

Two years ago a began to do a very difficult training and when my heartbeat was very fast, anaerobic I had the exact same symptom of my first and last relapse, numbess in the left side of my face. That's weird because just after, every symptoms dissapear. How could this be linked to an autoimmune desease?

Hi Belou,

That's interesting...
When I have optic neuritis, I do some fitness + I drink hot water. The pain disapears as soon as my pulse gets high

spiff1970 wrote:Hi all,

Since CCSVI is a blood flow problem, I wonder whether stuff like the position of our body (supine or upright), posture or doing strong physical effort affects the severity of it. Could the impacts of venous reflux be affected in some way by these factors?

Best,

Pedro

I think it all depends on where the blockages / malformations are.

Tough in general, I am sure the position of the body, the alignment of the spine, the physical effort and who know what else will affect the blood flow.

We just don't know what and in what way (at least until we know the exact positioning and reasons for the flow abnormalities in each specific case)

zen2010 wrote:Hi Belou,

That's interesting...
When I have optic neuritis, I do some fitness + I drink hot water. The pain disapears as soon as my pulse gets high

That's the opposite for me, as soon as my pulse get high my symptoms come back...

For me, in the past when I get my heart rate up my optic neuritis comes back, then goes away as soon as my heart rate returns to normal.

..and my guess is.. if you try to share this info with your neuro..you are either patronized or ignored..
.. my symptoms ebb and flow with barometric pressure swings (vascular).. especially optic issues, fatigue and brain fog.. ..numbness is good with moderate activity and good posture (vascular).. bad with heavy lifting, bad posture and stress (vascular)..

I also noticed that when I was in the desert a few weeks ago (Palm Springs) I had no symptoms at all - usually I have a little tingling and numbness at a minimum. Any ideas??

Before Liberation (Gee- maybe we will all be BL's?) I never knew how I would be for the day until I woke up that morning. I could always tell you when I awoke if the day would suck or if it was hopeful.
I believe it had to do with the hours spent in sleep with whatever problems I had with CCSVI.
just my 2 cents.
Rose ;)

were you on vacation? ..no stress.. Palm Springs.. has a temperate climate.. no extreme barometric swings.. that would do it for me.. hope you had good time

Thanks for your replies. I don't think that the temporary tingling and numbness that comes with physical effort is due to CCSVI but simply to our damaged CNS. We have lesions and nerve conduction is more compromised when we are stressed or do exercise. That's my feeling. My question is whether posture and physical effort really afects blood flow when we have CCSVI. Zamboni's article mentions changes in the blood flow depending on whether we are in the supine or upright position but it is not very clear about it...

Pedro

Hi, just read the thread.

You need to check out the Inclined Bed Therapy threads on this forum.

Also IBT reduces the heart rate by a significant 10-12 beats per minute compared to sleeping flat.

Andrew

Posture absolutely affects my symptoms. I know longer sit for too long a period of time, per Fletcher's thread on IBT and noticed lately that I have swelling around one of my ankles. This is very disconcerting for I have never had that before. I am doing experiments these last days to see if it could be do to 'how' I am still sitting when I am at the computer.
I think it could be related to the bumpy pillows I was using which might have been cutting off blood flow.
Any ideas from anyone is appreciated.

z

oh, one more thing. I do have an inclined bed now for about five months and I noticed that when I wake up there is little to no swelling. That is why I connected this strangeness to lumpy cushions...

z

This inclined bed theory is interesting... Mind you all, there are anecdotal theories about MS which relate it to the angle at which we sleep. Check the very end of this page: http://www.mult-sclerosis.org/howms.html
So, adding to the neurologist and the vascular surgeon I might be checking into a carpenter too.

spiff