This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all.

A very good friend of mine is a close friend of a great vascular surgeon for 15 years, now. I was a little shy about contacting him, but my friend did it "spontaneously".

The surgeon can "prescribe" the MRV and then I shall have it done. But I am a little nervous about the results. What if there is no stenosis at all? I doubt that this is the case, but my head is flooded with "what if"s.

Currently, I am on LDN, diet and a lot of supplements. How could they act on stenoses? I can understand it about supplements. But how could an increased endorphin production affect stenosed veins?

Thanks!

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Hi Sou-
LDN is also a vasodilator...we talked about it on the endothelial thread.

I also thought Jeff would show no stenosis...I was so nervous about getting him tested and being proved a crazy/internet obsessed/self-diagnosing wife (which I still am )

But seeing the actual malformation of his veins was astounding. Life-changing. And I believe you'll see the same.

Try not to live in "what if" land. Do the MRVs, but keep up your healthy eating and exercise, reduce stress, enjoy each moment.
Nothing ventured, nothing gained-
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Oh my! That is exactly how I felt going for my dopplers!!!

But to be honest with you, the dopplers are fallable and I am so glad you are getting MRV! What a lucky break for you! You'll have a good clear picture right from day one. How exciting!

When do you go Sou?

Hi Sou

LDN is a proangiogenic agent which has been shown to induce development of veins and arteries. If Zamboni is correct and MSers have strictures, then I would think the LDN is a good thing - a way to get the blood flowing.

http://cat.inist.fr/?aModele=afficheN&cpsidt=13567004


The increase in endorphins is a separate issue - the endorphins help to balance the immune system. So, IMHO when the vein is backing up from reflux and the damage starts in the brain and then the immune system gets activated we can only hope that the LDN is helping to get the immune system to calm down.

I have been on LDN one year - I have noticed an increase in strength and energy - no headaches either.

Sharon

Jeez, I have the same mixed up feelings about this as all of you. Normally, the good news would be no blockage. The bad news would be blockage. In this case, for our purposes, it’s just the opposite. How crazy is that? So you go in the test wanting there to be something wrong and wanting them to do some kind of procedure to fix it. How can you not be nervous and excited at the same time? What a crazy place we’re all in!!!

Cheer, thanks so much for your response yesterday on Yale. I’ll be happy (I think?) to be their first lab rat. I think I'm starting to understand how the poor mice feel!
N

Oh my $DEITY!

I used to have terrible headaches originating from the left cervical region. After starting LDN I haven't had any. Only the period before my last relapse I had terrible headaches, with a pain following the pulse of my heart. I attributed them to my super exhaustion + my benzene poisoning, but now it seems to be related!

When I had my relapse, about 10 people from work went to hospital, too. I had MS relapse, another had a terrible attack of his psoriasis, 4-5 were nauseated and vomitting and the whole department felt dizzy. I can't but relate my relapse to the toxic wastes of a chemical company that refluxed due to a blocked drain (WHAT AN IRONY!!!) and poisoned all of us.

Thank you for your support! We have such a wonderful group! And my regards to the administrators that made CCVI a topic, so that we can post whatever we feel without risking polluting the thread!

What I would like to see is the research thread in this "room", too.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

123

Sou the research thread IS here it is at the very top of the main page and it is a "Sticky" so it always stays up there..........

That's the one you meant?

I guess that it is!

Thanks. I will keep you up to date about my contact with the vascular surgeon.

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

sou
I'm so darned excited I can hardly stand it. I can't wait to see what he says about you. Is he the kind of person to do a study where you are if it turns out well?


Chris, That comment concerns me it is way too soon to say that this treatment is a cure for MS, we do not know that at this point. No one does. Even Dr Zamboni is cautious and he is the person who has treated 100 people with the liberation procedure and who knows how they are doing!!

Chris, I agree with Marie, but I know you were given the option by Dr. Kerr since you were one year out from treatment.

Another thing that I thought about earlier -what did the HyC treatment do to your veins? Please tell the doc about the treatment (as I am sure that you would). Chemo takes a toll on the vascular system - you may need more time to heal.

Marie,

I haven't met him in person, yet. If I judge by my friend, though, he is a very progressive and open minded person. He is around 40 years old and he is a very "happy" type of guy.

They served in the army together (it is compulsory in Greece) and had a great time.

The only drawback is that it is nearly impossible to find him on the phone.

I will keep you posted.

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Hi.

Ok, that was it. I am completely freaked out! I am undergoing MRV tomorrow at 13:00. Needless to say how nervous I am. I will keep you posted about the results.

One part of myself says that, at last, I am having an MRV, and the other part keeps asking "what if, what if, what if"! Argh! If I don't have a heart attack today, I will never have! Luckily, I have an appointment with my psychologist today. She will calm me down a little.

Thank you for your support!

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Sou,
Wow, awesome !! I bet you weren't expecting things to move so quickly!! I'm in the pre-heart attack mode myself just waiting for things to happen. I'm hoping when I actually have something more concrete the jitters will go away, kind of like stage fright.
(Cheer, not to put any pressure on you, but my mental well-being is in your mother's hands! )
Can't wait to hear what happens and how you do, Sou. Best of luck!!
N

I'm doing the math and I think 13:00 in Greece is right about now in LA. My thoughts are sent to you, sou. Don't be afraid. It will all make sense.

Still working on Yale, have sent out an e-mail. Will do some follow up calls. I know this all seems to be moving slowly, but it's only been since December that dignan first posted Zamboni's study. Many things have changed in less than five months!
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS