Who has had angioplasty and stopped drug treatment?

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

Postby Hockeydad » Tue May 10, 2011 11:07 am

Hey MM, sounds like me. I sat in the MS clinic in Toronto, doctor came to get me with his intern. They looked at my chart together, without even looking at me. Said something like "oh well, you have MS , actually CIF. with that gave me a bunch of literature from the different drug companies, a back pack to put them in, and told me to let him know which one I wanted so he'd write a prescription. I asked the difference between them, he said to read up on it first, as he had other patients to see. Needless to say, I haven't spoken to him since, and rely on exercise and vitamins (and prayer).
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
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Postby steviebhoy » Thu May 12, 2011 3:16 am

Had procedure 12th Nov, have been feeling great since then, ignoring the Flu, colds and tonsilitus.
stopped my avonex soon after, researched things and decided thay have done nothing for me and as many agree, are next to useless
I'm in the UK so insurance is not an issue, although selling it on the black market to fund treatnment would be good :lol: only joking
was scanned yesterday and found issues with valve in right side, closed up again, blood flowing better than before procedure but may have to get it done again, waiting to see what can be done with the valves, needs more research on this subject.

Hope this helps
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Postby bigfoot14 » Thu May 12, 2011 6:35 am

My wife stopped taking DMD's years ago, she tried both Beta-seron and copaxone, and neither one did anything for her.

She had the procedure on Feb 23, 2011, and just had a follow up ultrasound yesterday, everything is still wide open and flowing.

She is getting stronger and stronger...and is up to walking a mile at a time
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Postby fogdweller » Thu May 12, 2011 1:34 pm

MegansMom wrote:My daughter was diagnosed with MS Aug 2010, and was sent home with 2 literal backpacks of promotional literature from the MS drug companies each vying for her decision to " pick them", mugs, scarves, folios, diary books, calendars, etc. She was asked by her neurologist to "pick" which DMD.

Instead she chose to get diagnosed and treated for CCSVI Sept 21, 2010.

She made the decision to "see how it goes" without DMDs because her symptoms abated on the day of and after the venoplasties. It's easier to not start than to stop. She said she wanted to give it a year and assess relapses and need. So far , so good.

She HAS saved her insurance company thousands this past 8 months.


This is the argument that will ultimately win the day for insurance coverge. However, a single example won't have any weight, and EJC is correct, the docs don't want to change more than one variable at a time if they can help it. also the docs won't advise stopping an FDA approved treatment because of an experimental treatment. Understandable malpractice issue, and also good medical practice regardless of our personal beliefs about what works. We will need scientifically proven results.

We keep coming back to that same impportant need. Get out there and be part of a study, everyone!!
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M.S. medications..........

Postby tiredloulou » Sun May 15, 2011 6:02 pm

I have been on rebief for the past 7 yrs..........copaxon before that for 1
I choice to stop injections , after my ccsvi treatment.........

I just had my 6 month follow up, results to be given this week
feeling good, balance improved. cognitive improved, fatique has not return as of to date

if mentally stronger it tends to help you feel physically stronger
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Postby BadCopy » Tue May 17, 2011 5:04 am

I stopped Betaseron April 2010, first CCSVI procedure late August. I stopped not because I thought that I would be cured but because with or without DMDs I had continued to slowly progress for the last 10 years.
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Postby 1eye » Tue May 17, 2011 7:06 am

My history with DMDs: I used to be a believer. Now I realize that the momentum of a lot of house, car, executive jet, land, and other large-ticket purchases based on expected continuation of use of this medication by large numbers of people, is the reason for the continued promotion of these drugs, to the detriment of anything seen as competing with them. That is also the reason that, instead of having lower prices in a market filled with competition, the prices have continued to rise, and every new product costs more than the last. Greed has no antidote.

I started off with lower-dose i-1A (I will avoid brand names). Then the higher-dose studies came out and I dutifully asked for and got it. Then the confounding factor: I started asking about LDN. I told my doctor: if she didn't give it to me, well it could not possibly do any harm and I would try to get it anyway. Big, big, big mistake. I thought I'd temporarily stop my i-1a. No chance, sucker. No more i-1a for me. I was spms, now. I was in the middle of trying to get onto a study anyway, fty-720. I did a lot of research, and found out they had actually watched fluorescing mousie T-Cells on TV, and this drug made them all go hide out in the mousie spleen! Meanwhile my friend was on antegrin on a different trial, so I though I'd buy a few shares just for a laugh.

Then my number came up. I was being randomized for the fty720 trial. I called up the researcher, and said, couldn't they hurry that up, as I was afraid I was progressing and would not last till my appointment with them before I was ineligible. My second big, big, big, mistake. A meeting of the appropriate people was convened, I was declared past the required maximum EDSS, and the place in the trial was given away.

In protest I took my wife and a couple friends on a 500 meter walk to prove I could do it unassisted, but that was not any help to anything but my ego.

Meanwhile people were dying, and my friend was taken off her trial. I lost my investment in her drug. Funnily enough, the one drug I never invested in was fty720. She is on that now, having got onto a later trial I was excluded from, and is still taking it. She is still considered "RR'MS'", while I have gone from a cane to a walker to a wheelchair and back to a walker.

Since that time I have also tried and been refused re-prescription of glatrimer acetate. It was prescribed 'on the sly' by a different doctor on temporary replacement. I also tried, and deliberately stopped mitoxantrone. I have the personal belief it was directly responsible for my heart attack four years later. One of the reasons I stopped the mitoxantrone was that they had unilaterally withdrawn my glatrimer acetate prescription, to keep themselves kosher or whatever. Just as that was happening, the study was released to the public, about mitoxantrone's synergy with glatrimer acetate. Just to rub it in.

I did get on a nice long multi-center randomized controlled trial of a drug, that was treating exactly what they said I had: "SP'MS'". They called it MBP8298. I was told I had to go through what ended up as a 1.5 year "wash-out" period, because of the mitoxantrone, and of course could not take anything like a DMD, while on the trial.

After it was all over and I found out that it was ok, because I had been on placebo for two years anyway, I asked to be put on antegrin. They had actually promised that they would put me on it. They refused, saying there was now no hope left. Zamboni came along just after that. I was not desperate.

I had learned that the drugs they gave me were as likely to hurt me as to help me, sometimes more, and that they were much much more likely to make somebody else rich. That's why they are there. It came as no surprise when I heard about the kickbacks.

I lost some money, but not nearly as much as some of their other marks. I had a heart attack, and ended up with three stents, I live a fairly lonely life, typing at TiMS a lot. I am completely disconnected with the so-called 'MS' Clinic I used to go to. They will have their reward in heaven. Mine is here. :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby Cece » Tue May 17, 2011 10:39 am

typing at TiMS a lot.

we're lucky to have you, 1eye.

What an ordeal with the dmds!
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Postby fogdweller » Tue May 17, 2011 11:02 am

1eye wrote: They refused, saying there was now no hope left. Zamboni came along just after that.


What CCSVI treatment have you had and what results? It is probably elsewhere in TIMS but I am not as good as Cece in finding that stuff.
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don't forget about vitamin D

Postby ThisIsMA » Tue May 17, 2011 11:09 am

I was lucky enough to be diagnosed after the first studies about Vitamin D came out. I haven't ever been on DMD's because I feel I have enough bad symptoms without adding to them by DMD scary side affects.

People tend to discount Vitamin D because its so simple and inexpensive, "how could a vitamin possibly help more than a $30,000 a year prescription drug?"

Well early small studies show that high dose vitamin D is more effective than DMD's with virtually no side affects. And there is good scientific rationale as to why it is effective. But you've got to be tested and retested (a simple blood test) to find out where your vitamin D level is initially and how much it increases in response to supplementing, so you can determine how much you as an individual should take. Its very individual.

I've read that people with MS tend to have very low base line vitamin D levels. That certainly turned out to be the case for me. My first test came back with a level that was down near the level that causes rickets! After bumping up my levels with 10,000 IU's a day for 2+ months, I now take 5,000 IU's of D3 as a maintenance dose which keeps my level up toward the high end of the normal range. But how much to supplement to achieve that is different for everyone, you need to get tested.

How does this relate to CCSVI? Vitamin D is important for vein health. It also is an important immune system regulator.

Big pharma is now trying to figure out how to alter vitamin D to make it patentable, so they can cash in on its effectiveness. This makes me want to vomit. Capitalism has its down side.

If I was on DMD's and wanted to quit, I'd get my Vitamin D level tested and then supplement and get re-tested till my D status was stabilized up toward the high end of the normal range.

Disclaimer: I'm not a medical professional, just a person with MS who has read studies and articles on the internet. Please do your own research, make your own independent decisions, and seek out whatever expert advice you think would be helpful in making your decisions.
DX 6-09 RRMS
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Postby 1eye » Tue May 17, 2011 1:58 pm

It's in my signature. I went to see Dr. Siskin in Albany on August 23, 2010.

Can't walk yet, can't play guitar yet. Am using walker and recumbent tricycle and Nordic ski poles. Am playing sloppy by ear piano. Think I think more. Think I have more energy. Have problems again on my right side according to follow-up. Am thinking of trying to get through by stubbornness but will see how long that lasts.

Have gone off several symptom-only drugs, but reserve them for times when I am at a low ebb, which still happen. Still on heart drugs.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby 1eye » Tue May 17, 2011 2:01 pm

I heard Ontario has stopped paying for blood tests for vitamin D. Really a tattoo would work. I take 4000 IU/day.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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