Patience everyone, CCSVI is real.

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

Patience everyone, CCSVI is real.

Postby magoo » Tue Jun 01, 2010 9:01 am

The emotional and personal opinions about CCSVI and it's possibilities have taken up a large space here. The scientific evidence and discussions about the theory have taken a backseat.

Even as a person who has benefitted greatly from correcting my CCSVI, I feel a little sad about the future for all with MS/CCSVI. It can be easy to feel discouraged when reading this board at times. How funny is that for a person who knows first hand how this treatment has changed my life with MS?

It seems a lot of people are looking for a complete reversal of all symptoms. That is very unrealistic, although I understand the desire. Those people with MS who have damage to their CNS may end up living with that damage. Those people with MS who have not suffered too much permanent damage may feel pretty normal after treatment, as I have.
Is that fair...NO WAY. But, this may be the reality at this time.

Maybe we can agree that correcting CCSVI will help certain symptoms such as; fatigue, cog fog, heat intollerance, body temperature regulation, headache, balance, and a few more. These make sense to me because when your brain is starved of oxygen and plaqued with excess iron it cannot function at it's optimal level. When normal bloodflow is restored and the tissue is receiving what it needs, it seems to immediately improve the symptoms listed above. The exact improvement on the mobility issues are harder to pin down it seems. Some have improvement and some don't.

Time and studies are what we have to wait for. During this time I would hope we could be respectful of the process. I understand the desire to throw your hands up, wave the white flag, and surrender to MS, especially when you feel awful and time keeps robbing you of your life and mobility. But, those of us putting ourselves into this research deserve some time and patience. The techniques are not perfected. The ups and downs during this time make sense because we are learning. Just because we don't have concrete answers yet does not mean we should give up. There is something to this theory. It has done more for people with MS than anything else. It is a reason to hope. It is a reason to support each other through the ups and downs.

As for me, it has taken me from my bed and put me back into life. It has enabled me to engage in life again. It has given my body a break from all of the medications I had to take to just get through the day. My children talk about my MS as something in the past. I don't know what the future will bring, but I will live each new day to the fullest now because MS is not stopping me. If there is a complication with my stents, or a reversal of my improvements in the future, I will be fine because this time has been worth it.

The obstacles we face and the patience we must exhibit must not stop us from hoping and continuing this research. This is a very exciting time for those of us with MS.
Last edited by magoo on Tue Jun 01, 2010 9:49 am, edited 1 time in total.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Donnchadh » Tue Jun 01, 2010 9:07 am

Well said!

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby Vhoenecke » Tue Jun 01, 2010 9:14 am

Good job Magoo,

I have the same results that you do with treatment but we don't know if the people with more damage will have repair in let's say 5-10 years. No one knows what will happen until that time comes. It is promising to see people that were not able to walk very much or very well are gettin up and going much stronger. Baby steps of improvement with MS are huge. I received an message from someone saying they had the treatment but weren't feeling well. Maybe they had an infection or something like that. I did ask if anything was different, she said she doesn't limp anymore. How HUGE is that? Any change big or small must be met with enthusiasm. How fortuante we are to have this theory out in the open now. Thanks to Cheer, Avis Favaro, Dr. Z and many others.

Val 8)
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Postby Cece » Tue Jun 01, 2010 9:29 am

I agree with all of this, there is a lot of hope here.

About the limping, though: with relapsing-remitting, that sort of change is common enough and not conclusive...but in someone progressive? That would be pretty big, I'd think.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby HappyPoet » Tue Jun 01, 2010 9:45 am

Rhonda,

Congratulations on your improvements, especially . . .

Magoo wrote:...it has taken me from my bed and put me back into life.

This brought tears to my eyes... getting back into life is what I hope for the most, and to know this has happened for you gives me such hope.

Best wishes,
~Pam
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Postby CRHInv » Tue Jun 01, 2010 10:00 am

Very nice Rhonda! I am in agreement with you, but you knew that;)

Val, I hope so much that we do find that people with more damage will heal in time. That would be just the most amazing thing.

Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby sbr487 » Tue Jun 01, 2010 10:19 am

To add to what Rhonda said - for the first time there is something about MS that makes sense ...
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Postby ozarkcanoer » Tue Jun 01, 2010 11:38 am

Thanks for the encouraging words. I see my LOCAL neuroradiologist in the morning to see what he has to say about my BNAC MRV and doppler imaging. I have stenosis and a "flap" near a valve. I expect he will say that he cannot treat me at this time, but nevertheless I have my fingers crossed !
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Postby BooBear » Tue Jun 01, 2010 11:44 am

Good luck, Ozark!!!!!
Three veins angioplastied.  One renewed life.  
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Postby StentorKate » Tue Jun 01, 2010 11:52 am

Very well said.
I think unrealistic expectations can be our worst enemy.
What I've found and marvelled in are the things I didn't even know were problems untill they went away!
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Postby magoo » Tue Jun 01, 2010 6:24 pm

I don't know if our struggle to propel this science forward is normal. It sure seems to have a lot of road blocks which make little or no sense. But, if we give in because it's difficult or too time consuming...we lose.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Katie41 » Tue Jun 01, 2010 7:29 pm

Magoo,
So true, so true! As usual, so well stated.

StentorKate,
That is what I've found. I, also, have been amazed at the things that I didn't know were problems until they went away!

Even though I am not a person who journals, I found that by recording the symptoms that vanished, those that returned and left, and those that never left, I have a better appreciation of the progress I've made. I try to take into account the various stresses that come up in life and how that may or may not affect the symptoms. As many in this forum are, I am an optimist and try to keep my attention on the positive. I enjoy the sunshine, the children's voices as they play, the beautiful trees, the inch worm, the blossoming flowers, the wind, and, especially, the very positive people here who work so hard to advance CCSVI treatment, so that everyone who wishes it has ready access to testing and treatment.
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Postby magoo » Tue Jun 01, 2010 7:55 pm

Katie, in response to your statement about various stresses that come up in life and how that may affect our symptoms, I wanted to share this:

Since treatment I have an increase in old symptoms when I have a cold or virus. I asked Dr. Dake about why this would be. Here is the response:
In terms of the increase in symptoms when you have a cold or virus, it may be related to a general stimulation of your immune system by the infectious process that effects the intensity of the immune reaction of cells that participate in the reaction to brain antigens released as part of the MS. I hear about similar patient experiences from our group after immunizations, flu, surgery, etc.

We may not leave treatment unscathed, but as you said, the benefit, any benefit, is truly remarkable and should be appreciated.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Cece » Tue Jun 01, 2010 10:10 pm

magoo wrote:Since treatment I have an increase in old symptoms when I have a cold or virus. I asked Dr. Dake about why this would be. Here is the response:
In terms of the increase in symptoms when you have a cold or virus, it may be related to a general stimulation of your immune system by the infectious process that effects the intensity of the immune reaction of cells that participate in the reaction to brain antigens released as part of the MS. I hear about similar patient experiences from our group after immunizations, flu, surgery, etc.

Thanks for posting this...I was just thinking tonight that it'd be nice to give up the daily copaxone pokes, but there is this to think about.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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