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Posted: Thu Apr 07, 2011 9:50 am
by sou
May I post my opinion about the immediate-but-not-lasting "wow! effect" after liberation?

We have a neuron running in a marathon with its nose blocked (hypoperfusion) carrying a weight of 50kgs (demyelination and increased energy demand for proper conduction). Its state of body and mind (DNA transcription profile) has been altered to get over this dire situation.

All of a sudden, the nose is unblocked (proper oxygenation)! However, it is already adapted to such a condition so running with the extra weight but by taking full breaths is a piece of cake (the wow effect), until its transcription profile is switched to normal (the back-to-normal effect).

Having a neuron run at a normal conditions will give it longevity. It just can't run under such circumstances until we die. It will die first.

This is just a personal opinion. I am not quite sure if I have explained it correctly. My English...

Posted: Thu Apr 07, 2011 5:33 pm
by jackiejay
so correct me if this is wrong.....the iron in the blood that is refluxing back into the brain leeches into the tissues of the brain and spinal cord initiating the immune system attacks that are associated with MS....having the CCSVI treatment should solve this problem....hence the need for DMD's seems unnecessary....

Posted: Thu Apr 07, 2011 6:20 pm
by CureIous
jackiejay wrote:so correct me if this is wrong.....the iron in the blood that is refluxing back into the brain leeches into the tissues of the brain and spinal cord initiating the immune system attacks that are associated with MS....having the CCSVI treatment should solve this problem....hence the need for DMD's seems unnecessary....
Exactly. One should feel free to exercise their right of choice, in conjunction with their treating professional, without it coming off as medical advice pro/con or otherwise.

I've stopped my DMD's, plain and simple. That's the risk I alone assume, no explanation needed, no regrets. Whatever some Dr. halfway around the world says about it, who isn't treating me, or anyone else on this board for the most part, is irrelevent.

That being said, he is saying, and has said, what any responsible Dr. would say in that position, "continue on your course of medications because we haven't a clue what all this is about and how it affects or doesn't affect your immune system". Sounds reasonable to me.

If patients want to go off the ranch and do their own thing, that's their responsibility, and their right to say what does or does not go into their body, but should always be done in conjunction with consulting with the treating physician for that particular medication in the first place.

My neuro didn't have a problem with it at all, wait and see was where we left it.

If other people decide to stay on the DMD's, I think that's great too, if you can afford it and it brings some peace of mind that you are covering the bases, have at it, sounds reasonable too.

But this hand wringing over what people will or will not do based on internet ramblings, is a spurious argument and a misguided attempt to control the uncontrollable.

Posted: Thu Apr 07, 2011 6:48 pm
by Cece
I expect there's more to it than just the iron leeching onto delicate brain tissue. The brain environment in CCSVI is hypoxic and undernourished with toxins accumulating. These conditions damage the neurons. So even when the proper blood flow is restored, the neurons are still damaged and may heal or may go through a wallerian degeneration-like process and still die. Even after successful treatment of CCSVI, we may still experience MS attacks and new disability. Of the DMDs, there is some evidence for copaxone playing a role in remyelinization, it provides some of the building blocks of myelin. Perhaps venoplasty plus DMDs is the winning combination. Granted I did quit mine too, I had a lot of injection site reactions and little confidence in its efficacy....

Posted: Fri Apr 08, 2011 12:50 am
by sou
The immune system's involvement is not really proven to contribute to the pathogenesis. It is only thought to. According to what was discussed at ISNVD, CCSVI is enough to ruin the CNS' microcirculation and damage myelin by itself without the need of the immune system.

Only time will tell.

Posted: Fri Apr 08, 2011 8:06 am
by Cece
btw sou I found this to be well-explained and an interesting thought.
We have a neuron running in a marathon with its nose blocked (hypoperfusion) carrying a weight of 50kgs (demyelination and increased energy demand for proper conduction). Its state of body and mind (DNA transcription profile) has been altered to get over this dire situation.

All of a sudden, the nose is unblocked (proper oxygenation)! However, it is already adapted to such a condition so running with the extra weight but by taking full breaths is a piece of cake (the wow effect), until its transcription profile is switched to normal (the back-to-normal effect).

Having a neuron run at a normal conditions will give it longevity. It just can't run under such circumstances until we die. It will die first.